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4600

To Care Always

Quality Care at the End of Life

Study Guide

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To Care Always _______________________________________________________________________

Quality Care at the End of Life“(The task of medicine is) to cure sometimes,

to relieve often, to care always.”Dr. Ambroise Pare

ACKNOWLEDGEMENTSWe would like to express our sincere appreciation to the following:

CLINICAL ADVISORS

Patrick Coyne, MSN, APRN, FAANClinical Director, Thomas Palliative Care Program

VCU Massey Cancer Center

Betty Ferrell, PhD, FAANResearch Scientist

City of Hope National Medical Center

Mary Lou O’Gorman, M.DivDirector of Pastoral Care

Saint Thomas Hospital, Nashville, TN

Kate Payne, RN, JDDirector of Ethics

Saint Thomas Hospital, Nashville, TN

Dr. Thomas J. Smith, MD, FACPMedical Director, Thomas Palliative Care Program

VCU Massey Cancer Center

FILMING LOCATION

VCU Massey Cancer CenterThe Thomas Palliative Care Program

Richmond, VA

Recipients of the prestigious Circle of Life Award from The American Hospital Association and the 2005 International Association for Hospice & Palliative Care (AHPC) annual University Award.

VIDEO PRODUCED AND DISTRIBUTED BY:

Envision, Inc.644 West Iris Drive

Nashville, TN 372041-866-321-5066

www.EnvisionInc.net

Kimberly-Clark Health Care Education 3

To Care Always


Table of Contents

Continuing Education Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

I. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

II. Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

III. Palliative Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

IV. The Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7A. Physical Aspects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7B. Psychological and Emotional Aspects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11C. Spiritual, Religious and Existential Aspects. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12D. Social and Cultural Aspects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13E. Advance Care Planning and Capacity for Decision-Making. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

V. The Plan of Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

VI. Communication. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16A. Patient and Family Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16B. Team Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

VII. End of Life Dilemmas. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

VIII. The Last Days . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20A. Patient Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20B. The Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

IX. Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

X. Following Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

XI. Taking Care of the Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

XII. Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

XIII. References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

XIV. Tool: Quality Care at the End of Life Survey. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

XV. Post Test. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

XVI. Continuing Education Application . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36

XVII. Evaluation Form . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

XVIII. Post Test Answers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38

NOTE: Palliative care must be tailored to the needs of the patient population, care setting, healthcare professionals and facility. This program is intended to address models of adult palliative care delivery, and may not be suitable for the specialized needs of the pediatric population.

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Instructions for Continuing Education CreditThis program has been approved by Envision, Inc. for 1.0 Contact Hour, Program Number 009EOL10.

Envision, Inc. is an approved provider by the California State Board of Registered Nursing, Provider Number CEP15437

To obtain continuing education credit:

• View video presentation

• Review study guide

• Complete CE application form, including applicant information,test answers and evaluation section

• Forward the application form and $10 processing fee to:

Envision, Inc. 644 West Iris DriveNashville, TN 372041-866-321-5066

• Certificates will be mailed within 4 weeks.

To Care Always



To Care Always


I. IntroductionWhat is a good death? According to the Institute of Medicine (IOM),1 a Good Death is free from avoidable distressand suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonablyconsistent with clinical, cultural, and ethical standards.

A Bad Death is characterized by needless suffering, disregard for patient or family wishes or values.1

The IOM,1 the 1995 SUPPORT study to Improve Care for Seriously Ill Hospitalized Patients2 and others havelisted the following statistics:

• More than 50% of adult and 85% of pediatric patients die in a hospital, often despite the fact that they would prefer to be at home3

• Families reported that dying patients experience moderate to severe pain at least half the time2

• Nearly 70% of the time Doctors did not discuss prognosis or CPR/DNR decisions2

• 53% of Doctors misunderstood patient’s CPR/DRN wishes, and at least half the time did not write the DNR orders requested by patients2

• 38% of patients are isolated in the ICU for more than 10 days2

• There is a high use of non-beneficial technologies among the seriously ill4

• As many as 30% of patients and their families spend most or all of their savings for the care of the patient2

• There is increased mortality and morbidity for the family members of patients with chronic and life-threatening illness5

And, one more statistic: According to the 1998 Urban Institute report, the population of people over the age of 65 inthe United States will rise more than 70% between 2010 and 2030. This means we will have more and more patientswith chronic or life threatening illness.6

These statistics should be worrisome for everyone, because how healthcare treats the dying and their families willeventually affect us, and those we love. As healthcare providers, we must regard care of the dying, as well as care ofthe living, as a core clinical responsibility. Dying should not be marked by neglect, care inconsistent with patient wishes,or preventable pain and distress. Instead, comfort and dignity should guide all care.1 When there is earlier access tosymptom management and supportive care, there is a great deal less suffering on the parts of the patient, family, andtheir caregivers. Helping a patient obtain a peaceful death is in everyone’s best interest.

II. ObjectivesAfter completing this program, the learner will be able to:

• Describe competencies related to the assessment and care of physical, psychosocial, cultural and spiritual needs of patients and families.

• Discuss ethical and professional principles of end of life care.

• Identify appropriate legal and regulatory issues regarding end of life care.

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III. Palliative Care

When asked to rate their concerns, dying patients stated that the following were most important to them:

• Receiving adequate pain and symptom management / To be free of physical and psychological distress

• Avoiding inappropriate prolongation of dying

• Achieving a sense of control over healthcare decisions

• Relieving burdens

• Strengthening relationships with loved ones.7

Palliative Care aims to prevent and relieve suffering by addressing physical, emotional, spiritual, societal and practical issues, and focusing on compassion and quality throughout the continuum of care. It is guided by a senseof empathy, respect and concern that addresses the unique needs of the patient and family, and ensures comfort and dignity.8

The whole-patient approach of palliative care works equally well in various acute care settings, such as the intensivecare unit, the emergency department, or outpatient setting by balancing the needs for crisis care with comfort care.Therefore, all healthcare professionals who work with the acutely ill, those with life limiting diseases,those with serious or life threatening disease, the imminently dying and their families need to be skilledand knowledgeable about providing palliative care from the onset of illness through the dying andbereavement process.9

Some facilities choose to implement a palliative care team to improve end of life care. Members of a palliative teammay include healthcare professionals from medicine, nursing, social work, chaplaincy, nutrition, rehabilitation, pharmacyand other professional disciplines. These professionals may be generalists or palliative care specialists who are credentialed in the field.8 In addition, well trained volunteers who are versatile and able to assist in many areas should be considered part of the palliative team.

Whether or not a facility has a palliative care team in place, there are certain core elements to a quality patient-centeredapproach to end of life that can and should be implemented in every acute care setting. The elements of palliate careare directly addressed in the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) standards10 theInstitute of Medicine’s publication “Approaching Death: Improving Care at the End of Life,”1 the Clinical PracticeGuidelines for Quality Palliative Care,8 the Center to Advance Palliative Care,11 the End of Life Nursing EducationConsortium curriculum (ELNEC),12 and the Education for Physicians on End-of-Life Care project (EPEC), now known asthe Education for Palliative and End-of-Life Project.13

There are many benefits to improved End of Life care. For the patient and family, quality palliative care:

• Assists the patient and family with difficult decision-making

• Helps the patient and family find meaning, purpose and resolve in this important event

• Overcomes issues that cause suffering

• Brings comfort during the greatest time of need

• Leads to greater satisfaction regarding care14


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For professional caregivers quality palliative care:• Improves and facilitates communication between patients and families and other team members

• Improves coordination of care between settings

• Provides feelings of greater competence and confidence in managing patients

• Produces greater job satisfaction and improved morale

• Creates satisfaction from having stood by the patient and family and given support14

And families, organizations and payors benefit from the most cost effective and appropriate care.14

IV. The AssessmentThe goal of the assessment in end of life care is the relief of suffering which can be physical, psychological, practicaland spiritual.8,10,11,12,15 A thorough assessment conducted by an interdisciplinary team consists of the followingaspects of care.

A. Physical AspectsThe disease state can affect end of life care and present unique challenges. For example, the pattern of functional decline,the manifestation of symptoms, and ability to interact with family or professional caregivers can differ among patients withcancer, chronic pulmonary disease, end-stage renal disease, dementia, and liver or congestive heart failure.9

In the physical assessment, disease history, functional status, medical disorders, diagnosis and prognosis are assessedand documented.16 Symptoms and side effects must be identified and managed appropriately, in a timely manner, andin a way that achieves the outcomes found acceptable by the patient and family. Treatment may include pharmacological,non-pharmacological, or complimentary or alternative treatments if desired by the patient, and specialists should beconsulted as necessary.8,17

1. Pain

Pain is a common symptom for patients with cancer, advanced malignant disease such as AIDS, and the geriatricpatient with chronic conditions.15,18 When pain is not treated adequately, quality of life is significantly reduced.Improved pain management promotes better quality of life and lengthens quantity of life.18,19 Sometimes unresolvedemotional or spiritual pain can exacerbate physical pain.18 The Joint Commission standards state that patients havea right to pain management and pain should be appropriately assessed, treated and documented.10

The patients self-report should be considered the gold standard for assessment.15,20 For patients who cannot communicate due to delirium, aphasia, language or other barriers, caregivers should aggressively treat pain as if it is present until proven otherwise - if there is pre-existing pain or evidence that others in similar conditionswould experience pain.21 Also consider non-verbal cues that suggest pain, such as withdrawal, grimacing, irritability and fatigue.22

According to the American Geriatric Society, pain can be relieved through medications such as opioids, nonsteroidalanti-inflammatory drugs (NSAIDS) and adjuvant analgesics and should be administered in the least invasive manner.23 Non-pharmacological pain relief can be physical in nature, such as repositioning, the use of heat andcold, or massage; or cognitive-behavioral in nature, such as the use of relaxation, guided imagery or distraction.19

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Barriers to pain management should also be addressed.8 Patients may be reluctant to report pain due to culturalissues, fears regarding their illness, or worries about tolerance or addiction.19 Patients must be assured that theydeserve pain management, that their providers rely on them to report pain, and that good pain management willimprove the quality of their life.8,19 In addition, healthcare providers may have fears of contributing to addiction or side effects, respiratory depression, or the hastening of death if using opioid analgesics.8 Knowledge of painrelief medications and their indications/contraindications is necessary.19 Other barriers to pain managementinclude insurance, economic or policy issues that can limit pain treatments, don’t reimburse for them or don’t coveror offer procedures that can reduce pain.19

Pain vs. Suffering

Pain and suffering, while often used interchangeably, are different. Physical pain is defined by the American PainSociety as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage,or described in terms of such damage, or both.”24 However, since pain is subjective, one should also considerMcCaffrey’s definition of pain: “Whatever the experiencing person says it is, existing whenever the experiencingperson says it does.”25

Suffering, on the other hand, goes beyond distressing symptoms to include emotional and spiritual dimensions.According to Cassell, suffering begins when a person perceives a “threat to their continued existence – not merelyto their lives but their integrity as persons.”26 Therefore, a patient may suffer greatly if they have loss of dignity,hope and purpose.1,27 Routine assessment of suffering is essential in improving or maintaining quality of life.28

Providers should recognize that all aspects of palliative care, including pain and suffering, are significantly influenced by culture. Care should be based on an assessment of the patient’s culture and be sensitive to their goals,values and beliefs.29

2. Dyspnea

Dyspnea, or shortness of breath, can result from physical as well as psychological elements.30 Dyspnea is commonin lung or heart disease, stroke, dementia, end stage renal disease, and up to 50% of the cancer population.17,30

Anxiety or psychological distress may also result in dyspnea. Therefore, the assessment of the patient shouldinclude physical factors, as well as a psychological issues.17,30

Opioids are very effective in relieving dyspnea and are considered the standard treatment in advanced disease.16,30

Other pharmacological treatments include bronchodilators, diuretics, steroids and other agents.17,30 Non-pharmacologicaltreatments include improving air circulation, elevating the head of the bed to relieve choking, using focused breathingtechniques, music, prayer or a calming environment.16,17,30

3. Constipation and Diarrhea

Constipation is a frequent symptom at the end of life, and can be due to opioids or anticholinergic drugs, dehydration,disease-related intestinal obstruction or motility, pain, and decreased activity.17,31 Constipation can cause abdominalpain, anorexia, anxiety, nausea, and in the elderly can lead to confusion. Providers should assess the probablecauses by obtaining a bowel history, assessing medication and food factors, and performing a rectal and abdominalexam.17 Treatments include laxatives, stimulants, stool softeners and dietary changes, as appropriate.17,31

Diarrhea can occur due to fecal impaction, parasitic or bacterial infections in HIV/AIDS patients, concurrent diseases such as irritable bowel syndrome, anxiety, or may be related to chemotherapy, radiation therapy or antibiotic therapy.17,31 Assessments should determine a bowel history. Interventions include dietary modifications,antidiarrheal medication and promoting hydration, as appropriate.17,31 Be aware that severe diarrhea, while distressing for the patient, may also be exhausting for family caregivers.


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4. Coughing

Coughing can occur in up to 80% of palliative care patients, and can cause fatigue, vomiting and insomnia.17,30

It is most common among patients with lung cancer, bronchitis, HIV/AIDS and congestive heart failure.17,30

Pharmacological treatments include bronchodilators, cough suppressants and expectorants, and antibiotics. Non-pharmacological treatments include cool humidifiers, elevating the head of the bed, and chest physical therapy.17,30

5. Weakness and fatigue

Weakness and fatigue are common in patients with advancing cancer, HIV/AIDS, coronary artery disease, rheumatoidarthritis, or in patients who are sedated or anemic.32 It may be disease related, treatment related from surgery ortherapy, or due to unrelieved symptoms such as diarrhea or vomiting.17,32 Fatigue can also occur in patients whoare clinically depressed or experiencing spiritual distress.16,32

Assessments should include physical, emotional, social and spiritual causes. Lab tests may be indicated such asCDC or thyroid function. Frequent rest periods, energy conservation techniques, and antidepressants may all beconsidered treatments; however, in most patients increasing weakness and immobility are a part of the expectedcourse of illness.17,32

6. Confusion/Delirium

Confusion can be due to unrelieved pain, hypoxia, cerebral metastases, constipation and urinary retention, infection,or it can be drug/drug withdrawal induced.17 Confusion can present as disorientation, hallucinations, inappropriatebehavior or communication, or physical restlessness.17,33 Delirium is an acute change in awareness or cognition. If these are recent mental states, all efforts should be made to identify and treat the causes, and assessmentsshould look for physical, psychological and spiritual causes.33 Clarity of mind is very important in helping thepatient and family resolve issues and say good-bye. Pharmacological interventions include neuroleptics, or eliminating non-essential medications. Non-pharmacological treatments include massage, comforting environments,and relaxation therapy. Confusion and delirium are extremely distressing symptoms for families, and they willneed additional support during this time.17,33

7. Pressure Ulcers

Pressure ulcers must be actively prevented to spare the patient painful and often overwhelming treatments.34

Based upon the assessment and the identified risk for pressure ulcers, the Centers for Medicare and MedicaidServices Pressure Ulcer Guidance35 suggests the following basic or routine care interventions:

• Minimize exposure to moisture and keep skin clean, especially of fecal contamination.

• Skin should also be handled delicately and moisturized. The causes of itching and discharges should be reviewed and treated.16

• Provide appropriate pressure-redistributing support surfaces

• Provide non-irritating surfaces

• Maintain or improve nutrition and hydration status, if feasible

• Identify and address adverse drug reactions that worsen risk factors for pressure ulcers

• Redistribute pressure35

Turning the patient from side to side every hour or two can redistribute weight. Areas of bony prominence may beprotected with pillow bridging, special supports or hydrocolloidal dressings.16 Use a draw sheet to facilitate turning,or consider a pressure-reducing surface if turning is painful to the patient.34 Prior to turning, massage can reduce

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the risk of skin breakdown by increasing circulation, and provide comfort to the patient.16 As end of life approaches,turning may be more distressing and burdensome to the patient and/or family.. The benefit and value may need tobe reevaluated.

9. Dehydration, Anorexia, Cachexia

Anorexia is the loss of desire to eat, or a loss of appetite associated with a decrease in food intake. Cachexia iswasting and general lack of nutrition that occurs during the course of a chronic disease.36 The primary causes aredue to the disease process, but may also be due to oral or system infection such as candidiasis, pain, nausea orvomiting, treatment or medications, or constipation or diarrhea.17,36 Dehydration and anorexia/cachexia can bedistressing for both families and caregivers because giving or receiving nourishment has emotional, social andspiritual connotations.17,36 The assessment should note the patient’s weight, loss of fat and muscle mass anddecreased strength, and take into account the impact on self-image and functional status.17,36

A dietary consultation can determine the foods or liquids the patient would like to eat or drink, and in the waythey would like them prepared, as well as encourage higher calorie foods or more frequent, smaller meals. Eatingfor pleasure should be a goal; appetite stimulants may also prove helpful.17,36 However, the family should be advisedthat dehydration and anorexia are to be expected as a natural part of the dying process and do not cause suffering.As the patient draws closer to death, providing artificial hydration and nutrition can carry significant risks and havelimited, if any, benefits.37 Parenteral fluids can have adverse effects; and enteral feedings or continuing food andfluids by mouth may neither lengthen life nor reduce symptoms, and may in fact add to suffering and increasesymptom burden. In fact, anorexia can produce ketones that create a sense of well-being and diminish pain.16,37

10. Nausea and Vomiting

Nausea and vomiting can also reduce food or hydration intake. Nausea occurs in up to 70% of patients withadvanced illness, and vomiting in 40% of patients.17 It can be due to medications, gastric irritation, liver failure,infections or the disease process; or can be treatment related.17,38 Assessments should determine the history orfrequency of episodes, the characteristics of the vomitus, lab values, and factors that contribute or alleviate.17,38

Pharmacological interventions depend on the cause and include antiemetics, anticholinergics, antihistamines, andsteroids. Non-pharmacologic interventions include distraction, relaxation techniques, encouraging slow eating, andserving meals at room temperature with clear fluids while avoiding strong smells.17,38

11. Oral Complications

Oral complications such as lesions, infections and bleeding can cause much discomfort. Oral hygiene can providerelief and promote healing, even in the terminally ill patient. Teeth should be brushed daily to remove plaque andbacteria.39 Patients who cannot tolerate brushing should have their teeth and tongue swabbed with saline, followedby an oral disinfectant or alcohol-free mouthwash.39 Patients with dry mouth or lips will require lubrication with awater-based lubricant.39 Ice chips can provide relief from thirst and reduce bacterial overgrowth, but some patientsmay find their mouth feels drier as the ice melts. If so, this should be assessed.39 If the patient also has dry, irritatedeyes, eye drops can be soothing.16


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B. Psychological and Emotional AspectsPatients at the end of life may experience anxiety, depression, delirium, agitation, restlessness and cognitive impairment.Loss of dignity and feelings of helplessness can result from patients facing or fearing lack of control. Family membersmay also suffer during and after the patient’s illness. 8,15,16,40

There should be an ongoing assessment of the patient and the family for psychological reactions, including stress,coping strategies and anticipatory grieving.8 Use open-ended questions, then listen attentively and anticipate needs.How are they responding to the illness? Do they feel angry, fearful, hopeless or depressed? What is the patient andfamily’s understanding of the illness, symptoms, side effects and their treatments? Is this the family’s first experiencedealing with the death of a loved one? How did they cope with deaths in the past? What caregiving needs and copingstrategies will be needed to support both the patient and the family?11,15,41

The support of clinicians, as well as grief and bereavement counseling before and after the patient’s death can beinvaluable in creating a positive experience and preventing problems from poor coping.8,10,11,40 The patient and theirfamilies should be referred by Social Services or Chaplains to culturally appropriate specialists, support groups, andother community resources if appropriate.8 Treatment alternatives, including pharmacological, non-pharmacological,and complementary therapies, should be clearly documented and discussed in order to make informed choices.8,12

Grief and bereavement programs must not neglect the family of the patient who dies suddenly from an unexpected illness or from an accident. In fact, families may be deeply affected, beginning with the manner inwhich they are notified of the death. The family will have been unprepared for the event and may suffer from substantialgrief for longer periods of time. Sensitive communication regarding the death is imperative, as is the need forgrief and bereavement counseling.9

Grief vs. Depression

Many caregivers mistake grief for depression. Grief is a common reaction to dying. The simple pleasures of life aremissed; and there are anticipated losses to be processed, such as separation from loved ones or missed opportunities.With grief, the patient will often undergo physical, cognitive and psychological changes in order to process their losses.Waves of agitation or restlessness may come and go until there is acceptance.42 Professional caregivers can help thepatient by assuring that changes in emotions are normal. Also, support from caregivers and family can help the patientmaintain a sense of hope and find pleasure.15

Depression, on the other hand, is not a necessary or normal part of the dying process. It is frequently under-diagnosedand under-treated.15,40,42 The symptoms of depression, such as loss of appetite and insomnia often mimic the symptomsand common physiological changes of illness, and side effects of treatments like chemotherapy.15,40,42

In fact, depression among patients is more common than most caregivers realize. In a recent study, one of four cancerpatients were determined to be clinically depressed.25 The presence of psychological distress, such as depression andhopelessness, can have devastating consequences for the patient, including amplifying the intensity of pain, affectingtreatment decision-making, causing withdrawal, and creating a strong wish for an early death.15,40,42

When assessing the patient for depression, ask: Are you depressed? What do you see in your future? What isthe biggest problem you are facing? Depression can also be assessed using structured interviews and the use of standardized rating scales such as the Hospital Anxiety and Depression Scale, the Beck Depression Inventory, and theZung Self-Rating Depression Scale.43 It is important that depression be assessed on an ongoing basis, and communicatedwith the physician as early as possible, as it may take weeks for effective counseling, drug therapy and complimentarytherapies to begin to work.15,40,42

Do not hesitate to ask screening questions about suicidal ideation if there is no evidence that it would lead to self-harm.15

Patients who express immediate, lethal and specific suicide plans should be evaluated immediately by psychiatric professionals and placed under continuous supervision.40

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C. Spiritual, Religious and Existential AspectsAll people have spiritual or existential concerns, although not everyone is religious. Spirituality has a much broader,more individual scope. It has to do with how an individual forms core beliefs and life values, which defines how theyfind comfort, peace and hope.27

Spiritual care is the work of all members of the healthcare team.27 In order to obtain an understanding of howthe patient and family express their individual spiritual needs, it is essential that team members assess their own definitions of spirituality, based on family and religious backgrounds, upbringing, and moral and emotional development.Self assessment allows for greater sensitivity towards the spiritual needs of others by allowing one to recognize multipledefinitions and perspectives.44

Spiritual concerns should be assessed, explored and addressed in both the patient and family.8 Following are questions that will help gauge the emotional well-being of the patient and family, and help the caregiveravoid preconceived notions and stereotypes.

Meaning: What is the meaning of the illness to the patient and family? 12,15,44,45,46

Fears/Worries: Is there fear of abandonment, regrets, or worries about life after death? Worries about become a burden to others? Fears of what the illness will bring? 15,41,45,46

Religion: What is the role of religion in the patient’s life? Will being in the hospital interfere with practices that areimportant to spiritual well-being? Is the patient struggling to find meaning and purpose in their life, questioning theirfaith, or seeking forgiveness? 15,41,45,46,47

Religious backgrounds may play a part in end of life decision-making and care. For instance, a devout Jew may requestthe presence of a rabbi during advance care planning, and the Buddhist philosophy on pain and suffering may influencethe use of analgesics. Healthcare professionals should be sensitive to the patient and family’s background and respectwishes during care.48 The team should also facilitate religious or spiritual rituals, especially at the time of death.8,10

Support: Are there family members or friends who will support the patient at this time? Is the patient a member of a community or group that shares beliefs and values? 15,41,45,46 Caregivers should facilitate contact with groups or communities, including clergy in their own religious traditions.8,10

Unresolved Issues: For many people to feel able to let go, there must be a chance to address unresolved issues. If possible, incorporate into the plan of care time for completing projects, visits with family, etc.15,41,45,46

When the patient expresses spiritual concerns be cautious not to deny, minimize or discount any feelings that are communicated. Avoid statements such as “You shouldn’t feel that way” or “Don’t say that.” Offer validation by repeating what your patient has told you and offering to help. For example: “I cannot imagine what it must be like for you to have this diagnosis. Help me to understand your fears.”46

As the patient’s physical world shrinks, the environment takes on greater importance. The patient may wish to havepictures, memorabilia or favorite objects around. Religious, spiritual or cultural articles should be respected andaccommodated and their care and maintenance incorporated into the plan of care.8 Relaxing music can be soothing,and the care team should ensure there is adequate space for families to visit, rest, eat or prepare meals, and provideflexible or open visiting hours.10,33 If possible and appropriate, the patient may request a visit from a cherished pet.10,33


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D. Social and Cultural Aspects

Social Aspects

The social aspects of a patient that can be adversely affected by illness include the patient’s caregivers, domesticneeds, community support, financial resources, and family relationships.8,15

When assessing social aspects of care, consider the following questions: Who are the patient’s caregivers?Are there domestic needs to attend to, and is there community support? For example, have arrangements been madeto care for pets or other members of the family normally cared for by the patient? How much change has occurred withthe social relationships outside the family?11,15

The facility may need to facilitate communication between family members, help with the reconciliation of relation-ships, or refer for assistance. Are there things the patient would like family to know, or something they would like tosay?8 If there is inadequate family communication and advocacy, the healthcare team will become critical componentsof support.11,15

What is the financial impact of the illness on the patient and family, and are there resources available to the patient?Financial hardship caused by mounting medical bills can cause the patient suffering by adding anxiety, a fear ofbecoming a financial burden to family, and feelings of shame. The family may have a great deal of stress concerningfinancial loss and responsibilities. A social worker can be especially helpful with questions of financial assistance orsocial support.15,41

Cultural Aspects

The National Institutes of Health State of the Science conference on end of life care in 2004 9 acknowledged that race,culture and ethnicity influence access to good end of life care. This is due to several factors:

• Healthcare provider stereotyping and provider bias

• Patient’s having different values, attitudes, beliefs, and preferences in end of life care

• Inadequate translation and interpreter services

• Inadequate financing of health care

Healthcare providers must be sensitive and open minded to a patient’s cultural and ethnic backgrounds and beliefs,because their perceptions are filtered through their cultural experiences. For example, sexual orientation, religion, age,ethnicity, and gender can all affect communication.41 A self-assessment is necessary to determine whether one’s ownbeliefs and past experiences are affecting conscious or unconscious attitudes that can compromise professional judgmentand ultimately, the quality of patient care.46

In order to improve care for all patients and their families, it is critical that cultural aspects of the patient beassessed, and all attempts should be made to meet the specific needs of the patient and family.8

When assessing cultural aspects, consider the following questions: What is the cultural background, andwhat are the concerns and needs of the patient and family? What are the goals, values and priorities that are importantto the patient and family? Are there ritual practices or dietary practices to be considered? Is there a need for an interpreter? Ideally, the facility hires healthcare providers that reflect the community it serves, and may have caregivers from the culture that may be accessed for care if needed.8,45,49

What are the cultural preferences regarding decision-making, truth-telling or disclosure?8 Does the patient want a lotof information, or the basic facts? How much information should be shared with family or friends? The patient’s goals,preferences and choices should then be documented and clearly communicated to all members of the care team.8,45,49

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E. Advance Care Planning & Capacity for Decision-Making In order for a patient to have quality end of life care, it is imperative that individual wishes and choices be documented,respected and supported within the limits of the law.10 Advance care planning is the process of planning for the possibilityof disability or death.

When a patient is diagnosed with a chronic, debilitating or life threatening illness, or upon transfer to the ICU, it isimportant to assess the patient’s capacity for decision-making. This includes demonstrating an understanding of the information presented; using the information to make an accurate and rational decision; appreciating the consequences of the decision; and refuting coercive influences.15 The patient who lacks the capacity to make their own decisions or is unable to communicate will require a proxy or surrogate decision maker to clarify the patient’sgoals and consent to care plans. If the patient has not pre-selected a proxy, the next of kin is usually made the proxy;however, refer to your individual state’s legal criteria.50 Surrogate decision makers should be provided assistance in understanding the legal and ethical issues of surrogate decision making, including honoring any known patient preferences and considering what is in the patient’s best interest.8

Next, determine if the patient has advance care planning documents. These include Advance Directives, Do NotResuscitate orders, a Medical Power of Attorney, surrogate decision maker, and preferences for organ donation.10,45

For patients who do not have end of life planning, this should be an integral component of the defined plan of care.8All adults should be given written information about their right to accept or refuse medical or surgical treatment,including forgoing or withdrawing life-sustaining treatment or withholding resuscitative services. Under the PatientSelf-Determination Act of 1990,51 if a patient does not have an Advance Directive, facilities receiving federal fundsmust assist in formulating one if the patient so requests. All 50 states have statutes that address the two aspects ofAdvance Directives - Living Wills and Durable Power of Attorney for Healthcare – however they vary from state tostate.45 In addition, patients and their families should also be advised to seek professional legal advice regardingguardianship agreements and wills.8

Advanced care planning is proactive because it avoids future conflict and confusion. It can build trust and asense of teamwork between the patient and the healthcare team. It can also help to relieve burdens on the patient andfamily when everyone is clear about the patient’s wishes and goals. Because this can be a difficult conversation, thediscussion should always take place in the context of the larger goals of care.50

Use questions to assess the values and goals of the patient and clarify wishes. “What I would like to do is talkabout the care that you would want to have if you were no longer able to express your own wishes. Are there goalsthat are important to you?” “I think we should consider the situations that may happen with your particular illness.Now, some of these may never happen, but it’s important that we know what you would like us to do should any ofthese come up.”50,52

Use clear, uncomplicated language the patient will understand, and avoid vague terms. Don’t ask if theteam should do “everything possible.” This can easily be misinterpreted. Instead, talk about what can be done for thepatient.53,54 Don’t ask if the team can “discontinue care” or “refrain from extraordinary measures.” The patient andfamily may interpret this as abandonment by the team, and feel their only choices are aggressive treatment or givingup.52 Instead, consider the following: “We’ve discussed our goals for care, and we’ve agreed that you will be made ascomfortable as possible when the time comes so that you will die peacefully. Because of that, I would like to note inyour chart not to use CPR or other heroic measures to bring you back should you die. Is this all right with you?” 54

Be culturally sensitive. Some cultures are not receptive to discussing advance care planning; therefore, it is imperativethat healthcare providers take the time to learn about the patient’s cultural and religious perspectives on death anddying, and take care not to impose their own views.54,55


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If the patient or family are not able to decide on end of life issues, respect their decision.54 At a minimum,encourage the patient to name the person or persons to speak for them if they can’t. Some people prefer to have afamily member or their physician make the decision for treatment at the time it is needed. If so, have the patient complete a power of attorney document.

Remember: It is important that all team members recognize and honor the patient’s wishes. It may be necessaryto reassess and review the patient’s preferences and update documents based on events during the trajectory of care.If documents are changed, be sure to provide the team with the updated information.10

V. The Plan of CareFrom the beginning, goals of cure, along with goals of comfort, should work hand in hand. As the curative goals nolonger become appropriate, the comfort goals should take more precedence. The goal is to promote the highestquality of life for the patient and the family and to establish an environment that is comforting and healing.52

A regular review of the goals and priorities of care will help the team and the patient and family collaborate towardthe same goals and avoid unwanted therapies. Goals of care can change based on the evolving needs and preferencesof the patient and family, and changing benefits or burdens.8 Therefore, negotiating the care plan requires frequentmonitoring, reassessment, and communication among the multidisciplinary team along the continuum of care.10,11,52

Patient Discharge or Transfer

As patients decline, the preferences for the setting of death should be documented.8 Whenever possible, hospice careshould always be considered a possibility as an integral part of the continuum of care.8,10 All patients should receive acomprehensive assessment to determine current status, the care needs of the patient, and the resources available tothe patient and family in the home or community. The team should help identify sources for care with considerationgiven to financial resources and reimbursement.10 End of life care often requires transition across settings of care andthe transfer process can contribute a great deal of stress for dying patients and their families. It is imperative thatthere be close coordination between the palliative care team, the hospice program, and other community resources.8Facilitation of continuity of care can avoid needless suffering and errors, ensure that choices and preferences arerespected, and eliminate perceptions by the patient and family of abandonment.8

For transfers within the facility that occur when death is imminent, see section VII. The Last Days.

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VI. CommunicationCommunication is important in all healthcare situations, but it becomes especially significant with end of life care. Thehealthcare professional must have mastery of the appropriate communication, interpersonal, and empathetic skills totend effectively to the patient and family, and to collaborate with other team members involved in patient care.8,41,49

Effective communication skills include:• Sharing necessary information

• Determining goals and preferences

• Active listening

• Offering support

• Assisting with medical decision-making

• Providing effective communication with everyone involved in the care of the patient and their families 8,41

A. Patient and Family CommunicationPatients and their families should be directly involved in all decisions which requires honest and open communicationregarding the diagnosis and prognosis.8 By promoting an understanding of the disease process, healthcare providerscan help patients clarify priorities and making informed choices, while at the same time reduce anxiety and fear.49,56

Practitioners must not wait until the patient is near death to initiate palliative care conversation. Somefacilities begin palliative care communication if the physician “would not be surprised if the patient died” in thenext 6 months or a year. The team then begins to prepare the patient and the family for death, even while diseasefocused care is in effect.27,56,57 If the patient is close to death, the team should prepare the family with sensitivity for the events that will take place, such as selecting a funeral home and making funeral arrangements; notifyingappropriate agencies such as Medicare and legal professionals; dealing with financial issues; and discussing autopsies or organ donation. These events can also be addressed in packets of information that can supplement verbal communication and support.11

Family conferences can prevent conflicts and address anticipated issues, or resolve problems. The following are indications for family conferences:

• There is a change in patient status

• There is a need for changing goals of care

• Spiritual or cultural beliefs are significant factors

• There is miscommunication or conflict between the family and caregivers

• There are conflicts in the goals of care.10,45

When beginning an important conversation, establish a private setting. Set aside uninterrupted time and turn off yourpager and the television. Be sure all involved parties are present, as well as appropriate members of the healthcareteam. The presence of a social worker or chaplain may also be helpful. Sit near the patient, so that eye-to-eye contactis possible.41,49


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While talking with the patient and family, be aware of and sensitive to the following:• Timing. Stress can make it difficult to hear or process information. Avoid overloading the patient or family

with too much information. Instead, find out if the patient or family wish to talk, how much they know already, how much they really want to know, and respond to their questions within a reasonable period. Be prepared to spend as much time to discuss issues as is needed.11,41,49

• Cultural differences. Be sensitive to proper verbal and non-verbal communication as well as addressing the appropriate spokesperson, information conduit, and ultimate decision-maker. Determine what each person wants and needs from the conversation.49

• Educational levels. Healthcare providers must speak in terms that can be understood, and continually assess and reassess the patient and family’s understanding of information. Offer additional resources for information and support if appropriate, and anticipatory guidance about the illness, treatments, possible outcomes and health system issues.10,11,56

• Non-verbal cues. As much as 80% of communication is non-verbal and includes body language, eye contact, gestures and voice intonation. Breathing deeply or unevenly, frowning or fidgeting are signs of anxiety or that the patient or family member doesn’t know how to communicate their needs.11,41

Next, Listen.

• Don’t anticipate what the patient might say; instead, LISTEN.11,41

• Do not seek to convince; seek to understand.48

• Acknowledge silence and use it to stimulate the patient to talk.11,41

• Nod your head in understanding.11,41

• If there is a break in the conversation, resist the urge to interrupt.The patient may need time to think about something painful or sensitive.11,41

Use words wisely.

• Use open-ended questions that require more than yes or no answers to encourage conversation. “Can you tell me what you understand about your health condition?”11,41,56

• Use phrases that reflect upon the patient’s thoughts, such as “You were scared.”11

• If you understand the patient, let them know. Repeat the patient’s thought. For example, “If I understand you correctly...”11

• If you aren’t sure you understand the patient, ask them to clarify their thoughts for you.“Can you help me understand what you mean?”11

• Don’t give advice unless it’s asked for. If you do give advice, offer it with modesty. Try “Have you thought about…”11,41

• Believe the patient.11

• Above all, be present for the patient and family – physically, mentally and emotionally.11

One of the most difficult aspects of discussing death is facing the emotions of the patient and family. However, manytimes the emotional expression - although intense - is usually brief. The best response is to offer silent support. Usepersonal touch to convey your empathy, if appropriate, and allow the patient to express their feelings.41,54

In addition, caregivers should not be afraid of showing their own feelings. If at a loss for words, or feel uncomfortablewith the topic being discussed, don’t change the subject or avoid it. It’s all right to say “This is difficult for me to talk

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about” or even “I don’t know what to say”. This relieves the pressure for both the healthcare provider and the patientbecause it acknowledges the humanity of the caregiver. This can be especially helpful if the patient or family strugglewith existential issues, such as “Why is this happening?”41

The one consistent request by patients and families regarding communication is honesty and clarity. It maybe difficult to express bad news for fear of how to handle the reaction, but in the end tactful, compassionate conversationwill be appreciated. Caregivers must strive for helping the patient and family find hope in realistic goals throughoutthe course of illness.49

Family members who cannot or will not be present with the patient should not be forgotten. They may benefit fromphone calls from the care team to update them on the patient’s status, and their presence at family conferences will help build trust with the health care team, prepare them for decision-making, and help with the work of grief.27

Consider if a conference call would be of value if relatives cannot attend. Also, a written summary of the meeting may be of value for the patient’s record with a copy given to the patient/family.

B. Team CommunicationThe patient’s physician is seen by the patient, family and by other team members as the official team leader. As such,doctors have an opportunity to promote collaboration by empowering others to voice concerns, and remaining in constantcommunication regarding the plan of care. In addition, physicians can often act as mentors or role models to others onhow to create effective personal and professional dealings.57

Perhaps the most important professional liaison is that of the physician and the nurse. Because of their visible bedsidepresence, nurses - more than any other team member - have an opportunity to get to know the patient and family andare often privy to the fears, concerns or problems that might arise.5 Nurses are in a unique position to enhance thequality of patient care and the patient and family relationship with the physician.1,57

Chaplains who work in healthcare settings can be uniquely qualified to offer spiritual care due to their training anddaily contact with the seriously ill and their families.

Social workers are seen as the center of interdisciplinary efforts to provide medical and support services to the dyingpatient and the family. They are instrumental in helping the patient and family adjust to the illness, help coordinate abroad range of services, offer assistance and information regarding treatment and quality of life issues, offer financialassistance, and psychological screening, counseling and referrals.1

However, all healthcare providers who interact with the patient and family will gain insight into individualized needs.For this reason, the daily exchange of information is essential. Written documentation in the medical record is anessential tool for communicating team member roles, goals for care, and the scheduling and results of planned conferences.10,41,49 Team members should always review the documentation before seeing the patient or family to becurrent with the care plan.

Regular team meetings should be used to promote discussion of clinical concerns, advocate for the patient and family,and resolve conflicts – between providers, or between a team member and the patient or family.10

In order to resolve conflict within the team, consider the following:• Try to remain objective

• Identify and describe your emotions

• Define the area of conflict and try to find agreement on the difference of opinion

• Discuss your concerns with a colleague, supervisor, or consult the hospital ethics committee10,41


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VII. End of Life DilemmasLife and Death situations are filled with emotional and challenging issues. Caregivers are often torn between the duty to do good work, and the duty to avoid harm. Add the legal complexities of the present healthcare system andinterpersonal conflicts and ethical issues will arise. This section will address some of the more common conflicts thatare unique to end of life care.

A Conspiracy of Silence

Palliative care stresses the importance of honest and compassionate conversation with the patient and family regardingthe illness and its possible outcomes. However, some individuals will prefer not to consider a bad scenario. And somecultures view truthfulness about diagnosis and prognosis as cruel and unnecessary.45,58

Good communication among the healthcare team to address concerns, and/or conferences with the patient or familyare often the best recourse for these situations. For example, when a family requests that the patient not be told theyare terminally ill or vise versa, a family conference can help the individuals understand that silence does not actuallyprotect anyone, and in fact, adds isolation to the grief each person is feeling.28,49,58

Requests for Assisted Suicide

There are times when the physician or nurse may be asked to hasten death. When presented with this situation, professionals should be direct in declining such requests while at the same time maintaining trust and loyalty, andwithout implying abandonment or destroying the trust that has been built.52 For example, “I understand it is importantfor you not to be a burden to your family, and that you would like me to assist you to die. Unfortunately, I cannot dothat. Is there another way that I can help you so that you won’t feel like a burden?” Then focus on good palliative careto relieve the suffering of the whole patient.52

Continuing vs. Withholding Life-Sustaining Treatment

Sometimes there are differences of opinion among the patient, family or team members regarding what a caregiverperceives as the need for continuing or withholding life-sustaining treatment and what the patient or family wishes.

If the family is requesting treatment that the team believes is futile, consider the following:• There may be a misconception as to the success of tube feeding, CPR or other interventions.

Ask open-ended questions to elicit information. For example, “Can you tell me what you know about tube feeding?” Then review the interventions, discuss their indications, contraindications, and possible outcomes.54,59

• Family members require intensive support in end of life decision-making. Fear of having to make decisions regarding another person’s life, guilt over past family issues, or hopes that new interventions may prolong life could be motivating these requests. Offer an empathetic comment to open dialogue. For example, “This seems to be a difficult decision for you.” 54,59

The request may be due to the intense desire to do something in the face of inevitable death. Families need help in doing something else rather than insisting on treatment. Their role as advocate for their loved one, making sure care is consistent with patient wishes, maintaining vigil or telling their story is just as important as any treatment.

• There may be mistrust of doctors or the healthcare system. If there are signals of mistrust, address the issue openly and ask about their concerns. 54,59

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Healthcare Professional Acting Against Patient or Family Wishes

There have been instances where healthcare professionals have knowingly acted against the expressed wishes of thepatient and family. It serves to remind caregivers that one of the goals of palliative care is to routinely seek and documentthe preferences for care, and make every attempt to honor those wishes within the limits of the law. When there isfailure to honor these preferences, the incident must be documented and addressed by the team.8

If a healthcare professional insists on life-sustaining treatment that seems futile, recognize there may be a “rescuementality” where death is seen as failure. This can result in aggressive treatments that add greatly to patient discomfort.In fact, the opposite approach is reflected in palliative care, where there is an acceptance of death, and an emphasison quality of life.1

The Principle of Double Effect

During the last hours of life, patients may report extensive pain, or appear to suffer from escalated pain and requireincreased opioid doses for relief. Some professionals believe that greater and greater doses will be needed during thelast hours of life, and fear that by providing these doses, they will hasten death. This fear, known as the Principle ofDouble Effect, is often based on inaccuracies.58 Studies show that patients who required significant doses of opioidsdid not have different survival rates than patients with stable dosing. The American Nurses Association supports theincreasing titration of medication for symptom control, even at the expense of hastening death, as ethically justified.60

Team members who have religious beliefs or personal values that conflict with patient or family wishes, who areapproached to perform acts they disagree with, or are faced with other ethical dilemmas should discuss their concerns with their supervisor, during team conferences, or with the Ethics Committee, the Medical staff office, orthe Chaplain. Many institutions make reasonable efforts to honor employee requests not to participate in care situations that violate their moral sensibilities. If accommodations cannot be made, the employee should continueto provide care consistent with standards and institutional norms.

VIII. The Last DaysThroughout the continuum of care, palliative care strives to provide comfort to the patient and family. However, duringthe last few days of the patient’s life, it is important that the healthcare team maximize physical care and symptomcontrol, and enable the patient and family to find personal growth and closure - emotionally, spiritually, and throughrelationships.17 There is only one chance to get this right - If managed poorly, there may be needless suffering on thepart of the patient, and significant distress for the family that can last long after the patient’s death.16,45

A. Patient IssuesActive dying, or the process of total body system failure, generally occurs over a period of 10 to 14 days, although itcan happen as quickly as 24 hours. To make the last hours count as much as possible, advance preparation is essential.16

Around the clock care will be needed, as will clear communication between the palliative team and family members.The role of the physician and other members of the palliative care team should be clarified. A knowledgeable physicianshould be made available by phone 24 hours a day, 7 days a week, and the contact information for other team membersmade available.16

Transfer from the ICU to a private room may be appropriate if it allows the patient and family more private time.10

However, unnecessary transfers can add stress, and families may feel more comfortable staying with the care teamthey know and trust.


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The palliative care team should be aware of:• The patient’s health status

• The goals for care

• Advance directives, resuscitation status, and the assigned proxy for decision making

• The potential time course, while keeping in mind the unpredictability of death

• The signs and symptoms of the dying process

• The treatment for signs and symptoms, based on patient-family preferences

• The patient and family’s personal, cultural and religious traditions, rites and rituals preceding death, and after death8,16

Medications, supplies and equipment should be made available in anticipation of problems. Clinical concerns shouldbe handled promptly, and questions answered calmly. The dying process may be distressing for the family; however,family should be helped to understand the signs and symptoms of the dying process. They should be informed that whatthe family perceives during the dying experience may be very different from what the patient actually experiences, andwhile upsetting, these symptoms are normal.16

Signs and symptoms of the dying process:• Increased weakness and fatigue47

• Hypersomnolence, where the patient is always inclined to sleep.16

• Mottling of the skin16

• Cool extremities and truncal warmth, resulting in clammy skin.47 Do not put blankets on the patient as most dying patients cannot tolerate the weight.27

• Cyanosis or blood pooling along dependent skin surfaces 47

• Tachycardia 47

• Hypotension 47

• Decreased clarity of sight 47

• Joint position fatigue. The patient may need to have their joints moved every hour or two to promote comfort and prevent pressure ulcers.16,34

• Changes in breathing, such as frequent, shallow breaths or periods of apnea.47 Comfort the family with knowledge that the patient is not suffocating and probably will not benefit from oxygen. Instead, open windows, allow space around the bed, and administer morphine or another opioid to relieve breathlessness and anxiety.16,30

• Loss of swallowing ability, making eating or drinking impossible. Feeding the patient can result in vomiting and aspiration.38 Giving IV fluids can cause swelling, pain and nausea.38 Instead, let the family know the lackof hunger or hydration is expected, and can create a euphoric feeling as ketones increase in the blood.16,47

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• Excessive saliva and oropharyngeal secretions. The resulting gurgling or rattling sounds with each breath can sound like the patient is choking, and is often referred to as “the death rattle”.30,47 Suctioning is strongly discouraged, as this is rarely beneficial, and can be disturbing for the patient.30,47 Medications can reduce the production of these secretions, and all oral intake should be discontinued to prevent aspiration.30,47

The patient can also be repositioned by moving them onto one side or to the semi-prone position.16,47

• Decreased or absent urine production. This is due to renal or liver failure, and cannot be reversed with parenteral fluids.16

• Incontinence of urine/stool. Patients will require cleaning and skin care. Absorbent pads or surfaces or a urinary catheter may minimize the demand on caregivers, as can a rectal tube if diarrhea is excessive.16

• Visual and auditory hallucinations/confusion or disorientation/ delirium.33

Freemon62 describes two neurological paths that the patient may follow. On the “normal road” the patient progressesfrom sleepiness to lethargy, and finally to a comatose state and death. The majority of patients experience this path.The more “difficult road” will have the patient acting restless and confused. They may have hallucinations and becomedelirious and agitated. The patient may moan, groan and grimace which can be misinterpreted as pain; however paindoes not suddenly appear during the last hours of life when not previously out of control. Finally, the patient can havespasms and seizures and ultimately coma and death. Healthcare professionals should help their patients avoid the“difficult road” whenever possible.

The comfort care of the physical and psychological needs of the patient is paramount.13,19,42 The need formedications should be reassessed, leaving only those that manage symptoms. Team members should use the leastinvasive administration route, and reduce tests, procedures or labs that affect the patient’s comfort, leaving only thosemedications that manage symptoms such as pain, excess secretions, terminal delirium, dyspnea or reduce the risk ofseizures.16,47 Pain should be managed aggressively and effectively. However, for patients with intractable pain, sedationmay be the only alternative that provides comfort.19

The psychological needs of the patient such as hopes, fears and expectations must also be actively addressed duringthe dying phase.10,33 Clergy and family may be greatly appreciated at this time. When tending to the patient, the teamshould assess and care for psychological and spiritual symptoms, such as:

• Fear of the dying process• Awareness of the proximity of death• Fear of the unknown• Increased focus on spiritual issues• Withdrawal by family and friends 62

Hearing is the last sense to leave the body, so while it is not certain what an unconscious patient can actually hear,everyone in the vicinity of the patient should assume that the patient hears everything and act accordingly.16,33 Thepatient should be talked to as if they were conscious, and should not be talked “over”.16,33 Encourage the family toshow affection by touch or as much intimacy as they feel comfortable with.

B. The FamilyThe family may need assistance in saying good-bye or resolving family issues.11 Families should be advised not waituntil the last hours of life to communicate with the dying patient, as many patients at this time are comatose ordrowsy, and may not be able to respond. Also, it often seems that the patient needs to be given permission to let go.The family should be encouraged to tell the patient that they love them; that although they will miss them that theywill be ok; and that it is all right to die. This often brings closure to the family as well as the patient.16


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Prior to, during and immediately following death the family will need spiritual support to address grief and bereavement.8,10,47 Remember that everyone grieves in a different way. The patient and family’s response to grief and loss will vary widely according to their individual ability to cope and the meaning and value placed on the loss.Family caregivers may need clergy, additional family and friends, or support groups to relieve the emotional and physical stress and burden of caregiving.10

IX. DeathThe plan of care should make sure that last prayers, declarations or rites are carried out according to patient and familywishes.16 It is most important at this time to support the family in recognizing the signs of death.

The signs of death:• Heart stops beating

• Breathing stops

• Pupils become fixed and eyes may remain open

• Body temperature drops

• The body becomes pale and waxen

• Urine and stool may be released

• The jaw may fall open

• There may be the sound of fluids trickling internally.16

X. Following DeathThe time immediately following death is difficult for the family. It is suggested that the care team not abandon thefamily at this time. Instead, acknowledge the patient’s death by offering active listening skills, compassion and presenceto grieving family members. Allow the family to spend as much time with the deceased as they need, and encouragethem to touch, hold or cleanse the body if they wish.47

Facility policies vary. However, the following will generally need to be finalized by the healthcare team after thepatient’s death in the inpatient setting:

• Follow regulations regarding notification of the Medical Examiner

• The MD or Nurse completes a Death Notice Form and Authorization of Autopsy Form (if applicable and according to facility policy)

• A Donor Form is completed (if applicable)

• Post Mortem Care is completed.

Members of the palliative care team may be able to offer assistance to the family by making phone calls and securingdocuments for insurance, meeting financial obligations, etc. There should be instructions for how the person’s body is to be handled after death, and when and how the body is to be moved.16 If funeral arrangements were not madeahead of time, pastoral care can assist with making arrangements for services.16

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It is important that the palliative care team acknowledge the life of the patient by making phone calls,sending cards or attending the funeral or services. Contact with the family members will also allow the team toassess bereavement risk and refer community bereavement resources if needed.63

When writing a condolence letter, consider these guidelines:• Identify the deceased by name and acknowledge his or her death• Express sympathy• Recall a memory, special quality or legacy of the deceased• Note community resources for bereavement care or extend support• Share a personally meaningful quote or perpective.64

If making personal contact:• Identify the deceased by name and acknowledge his or her death• Express sympathy• Acknowledge the importance of grieving, and give the family “permission” to grieve• If appropriate, offer activities, rituals, memorials to remember and honor the life of the deceased• Ask about the needs of all family members, especially children• Note community resources for bereavement care or extend support.64 The family, including children, should

be referred to culturally appropriate specialists, support groups, and other community resources if appropriate.

XI. Taking Care of the CaregiverFinally, there must be an appreciation of the impact of the dying patient on the palliative care team.8 Caring for the dyingand their families is a stressful job. To care for those at the end of life, providers must have a compassionate presence andappreciation for the suffering of others. But unless providers recognize and share their feelings, values, limits, andfrustrations, emotional, spiritual and physical health can suffer.65 Personal issues, such as unresolved grief of a loved one, a lack of personal experience with death, or fear of one’s own mortality can interfere with needed objectivity and impactpatient care. Feelings of inadequacy when dealing with the dying and their families may cause healthcare providers toemotionally withdraw from patients, resulting in self-destructive coping mechanisms, or denial about death and dying.41,44,66

Some caregivers find balance by attending funerals, sending sympathy cards, making condolence calls or by prayer. By addressing one’s own definitions of meaning, transcendence and suffering caregivers can explore these same questions withtheir patients and their families.27 Team meetings can also provide a healthy environment if the burdens of suffering areappreciated and addressed in a supportive manner.8 Team meetings should also be considered an opportunity to praise theefforts of a team member on a job well done, and provide mutual support.53 In addition, meetings are beneficial after a “baddeath” to review what went wrong (and what went right) and how to prevent negative outcomes in the future if possible,while at the same time supporting staff. Finally, counseling should be made available to all who care for the terminally ill.8


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XII. ConclusionIn conclusion, a palliative care approach to end of life adopts strategies that prevent pain and suffering, promote comfortand well-being, and improve communication. By using a whole patient approach, we can provide the patient and theirfamilies with a better, more satisfactory death experience, and we as caregivers can learn that even if we can’t alwayscure, we can always care.

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XIII. References

1. Approaching Death: Improving Care at the End of Life. Field, Marilyn and Cassel, Christine Editors. Institute of Medicine, 1997. www.nap.edu/readingroom/books/approaching

2. SUPPORT Principal Investigators. A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA. 1995; 274(20):1591-1598.

3. From Clinical Practice Guidelines for Quality Palliative Care, Introduction: Where people die and where they want to die: (Teno JM, 2003; etc){CCS 6, 13; CC 3, 3.1, 3.2.}

4. From Clinical Practice Guidelines for Quality Palliative Care, Introduction: Problems of burdensome technologies: (Teno JM, Fisher ES 2002).

5. From Clinical Practice Guidelines for Quality Palliative Care, Introduction: Attention to caregiver burden and support: (Tolle SW, Girard DE 1983; etc.){CCS 3.3, 10, 10.1-10.3, 11, 11.1, 11.3, 13, 13.1, 13.2, 14, 14.1, 14.2; IDT 4.1, 5.1; HR

7.2}.

6. From Clinical Practice Guidelines for Quality Palliative Care, Introduction: Aging America: (Burman L, Penner R1998).

7. From Clinical Practice Guidelines for Quality Palliative Care, Introduction: Patient- and family- centered care; Theimportance of eliciting and responding to patient and family values and goals: (Kristjanson LJ 1986 and 1989;

etc.) {ARE 3,31-3.3, 3.5, 3.6,8,124,14.1,14.2 HIFCCS 3, HIFSIC 1, 1.1-1.7,5; HRCFSIC 1,1.1-1.9,2,2.1-2.6, 3,3.1,5,7,7.1-7.4.

8. Clinical Practice Guidelines for Quality Palliative Care. National Consensus Project for Quality Palliative Care, May 2004. www.nationalconsensusproject.org

9. National Institutes of Health State-of-The-Science Conference Statement: Improving End-of-Life Care. December 8, 2004. http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm

10. 2004 Crosswalk of JCAHO Standards and Palliative Care – with PC Policies, Procedures and Assessment Tools. Center to Advance Palliative Care, Sutton Group. February 18, 2004. www.capc.org/jcaho-crosswalk

11. Supportive Care of the Dying: A Coalition for Compassionate Care Organizational Assessment: Personnel Competency/Performance. Accessed from Center to Advance Palliative Care Guidelines, Policies, Procedures and Protocols. www.capc.org/tools-for-palliative-care-programs/clinical-tools/policies-procedures/core-competencies.doc

12. Ferrell B, Bednash G, Grant M, Rhome A. End-of-Life Nursing Education Curriculum (ELNEC). AACN & COH, 2000. http://www.aacn.nche.edu/elnec/curriculum.htm

13. Emanuel LL, Von Gunten DF, et.al (199). The EPEC Project: Education for Physicians on End-of-Life Care (EPEC) Curriculum. Chicago: American Medical Association. http://epec.net/EPEC/Webpages/index.cfm

14. Consortium Releases Clinical Practice Guidelines for Quality Palliative Care. National Consensus Project. Newsletter Article B, April 13, 2004.

15. The EPEC Education for Physicians on End-of-Life Care Participant’s Handbook. Module 3: Whole Patient Assessment. EPEC Project, 1999.

16. The EPEC Education for Physicians on End-of-Life Care Participant’s Handbook. Module 12: Last Hours of Living. EPEC Project, 1999.


17. Sherman, DW et al. Teaching Symptom Management in End-of-Life Care: The Didactic Content and Teaching Strategies Based on the End-of-Life Nursing Education Curriculum. Journal for Nurses in Staff Development, May/June 2004, Vol. 20, No. 3, Pgs 103-115. http://nursingcenter.com/prodev/ce_article.asp?tid=511443

18. McCaffrey M. Nursing Practice Theories Related to Cognition, Bodily pain, and Man-Environment Interactions. Los Angeles: UCLA Press, 1968:95.

19. Paice JA and Fine PG. Pain at the End of Life. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

20. Fink R, Gates R. Pain Assessment. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

21. Coluzzi PH, Volker B, Miaskowski C. Comprehensive Pain Management in Terminal Illness. Sacramento: California State Hospice Association, 1996.

22. Hurley AC, Volicer BJ, Hanrahan PA, Houde S, Volicer L. Assessment of discomfort in advanced Alzheimer patients. Res Nurse Health 1992; 15:369-377.

23. American Geriatric Society Panel on Chronic Pain in Older Persons. The management of chronic pain in older persons. J Am Geriatr Soc 1998;46:635-651.

24. American Pain Society Quality of Care Committee (1995). Quality Improvement Guidelines for the Treatment of Acute Pain and Cancer Pain. JAMA 274(23):1874-1880.

25. Bottomley A. Depression in cancer patients: A literature review. Eur J Cancer care. 1998;(7):181-191.

26. Cassell EJ. The nature of suffering and the goals of medicine (1982). N Engl J Med 306:639-645.

27. O’Gorman, Mary Lou. Spiritual care at the end of life. Crit Care Nurs Clin N Am 14 (2002) 171-176.

28. Byock, Ira R. The Nature of Suffering and the Nature of Opportunity At the End of Life. Clinics in Geriatric Medicine, Vol. 12, No. 2, May 1996.

29. Bates, MS. Ethnicity and Pain: a biocultural model. Soc Sci Med 1987;24:47-50.

30. Dudgeon D. Dyspnea. Death Rattle, and Cough. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

31. Economou DC. Bowl Management: Constipation, Diarrhea, Obstruction, and Ascites. In Ferrell B and Coyle N, eds.Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

32. Dean GE and Anderson PR. Fatigue. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

33. Kuebler, KK, English, N and Heidrich DE. Delirium, Confusion, Agitation and Restlessness. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

34. Bates-Jensen BM, Early L, Seaman S. Skin Disorders. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing.New York: Oxford University Press. 2000.

35. CMS Pressure Ulcer Guidance. CMS Manual System, Pub. 100-07 State Operations Provider Certification. Department of Health & Human Services (DHHS) Centers for Medicare and Medicaid Services (CMS). November 12, 2004. www.cms.hhs.gov/manuals/pm_trans/R4SOM.pdf

36. Kemp C. Anorexia and Cachexia. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

37. Kedziera P. Hydration, Thirst, and Nutrition. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

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38. King CR. Nausea and Vomiting. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

39. Oral Care Update: From Prevention to Treatment. Nursing Center, Nursing Management, May 2003. Vol. 34, Pages 1-11.

40. Pasacreta J, Minarik, P, Nield-Anderson L. Anxiety and Depression. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

41. The ELNEC Curriculum. Module 6: Communication. AACN & COH, 2000.

42. Little, L, Dionne, B, Eaton J. Nursing Assessment of Depression Among Palliative Care Cancer Patients. Journal of Hospice and Palliative Nursing. 2005; 7(2): 98-106.

43. Pessin H, Rosenfiled B, Breitbart W. Assessing psychological distress near the end of life. Am Behav Sci. 2002;46(3): 357-372.

44. Borneman T and Brown-Saltzman K. Meaning in Illness. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

45. Griffie, J, Nelson-Marten, P, Muchka, S. Acknowledging the ‘Elephant’: Communication in Palliative Care. AJN,Jan 2004, Vol. 104, No. 1, Pgs 48-57.

46. Snyder, Sherry A. Managing Psychosocial, Cultural and Spiritual Diversity in Patient Care. 2003 CER Publications.

47. Berry P and Griffie J. Planning for the Actual Death. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

48. Fife R, Gillman J, Wallace HG. Spiritual and cultural sensitivity in end-of-life decision making. Program and abstracts of the 6th Annual Clinical Team Conference of the National Hospice and Palliative Care Organization; April 21-23, 2005; Atlanta, Georgia.

49. The EPEC Education for Physicians on End-of-Life Care Participant’s Handbook. Module 2: Communicating Bad News. EPEC Project, 1999.

50. The EPEC Education for Physicians on End-of-Life Care Participant’s Handbook. Module 1: Advance Care Planning. EPEC Project, 1999.

51. The Patient Self Determination Act of 1990 (PSDA) (Sections 4206 and 4571 of the Omnibus Budget Reconciliation Act of 1990, PL 101-508. Effective December 1, 1991.

52. The EPEC Education for Physicians on End-of-Life Care Participant’s Handbook. Module 7: Goals of Care. EPEC Project, 1999.

53. American Association of Colleges of Nursing. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care.2001. www.aacn.nche.edu/Publications/deathfin.htm

54. Do Not Resuscitate Orders: Guidelines for Physician Staff. Froedtert Hospital, Milwaukee, WI. From Center to Advance Palliative Care Guidelines, Policies, Procedures and Protocols. http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/policies-procedures/dnr-orders.pdf

55. Congress, Elaine P. Clinical Work With Culturally Diverse Dying Patients. www.angelfire.com/on/NYCLTCethicsnetwork/econgress.html

56. 20 Improvements in End of Life Care – Changes Clinicians Could Do Next Week! Americans for Better Care of the Dying, www.abcd-caring.org

57. Payne K, Dunn J, O’Gorman ML, Cooper RS, Thomas CS, Redelheim P. Nurses as a driving force in changing physician behavior. Presented at NTI 1999.

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58. Stanley KJ and Zoloth-Dorfman L. Ethical Considerations. In Ferrell B and Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. 2000.

59. Managing Conflicts Concerning Requests to Withhold or Withdraw Life-Sustaining Medical Treatment: Guidelines for Physician Staff. Froedtert Hospital, Milwaukee, WI. From Center to Advance Palliative Care Guidelines, Policies, Procedures and Protocols. http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/policies-procedures/withhold-conflict-mgmt.pdf

60. American Nurses Association. Position statement on assisted suicide. 1994. 600 Maryland Avenue, SW, Suite 100 West. Washington, DC 20024.

61. Freemon FR. Delirium and organic psychosis. Organic Mental Disease. Jamaica, NY: SP Medical and Scientific Books; 1981:81-94.

62. Johnston-Taylor, E. Caring for the spirit. In C.C. Burke (ed). Psychosocial Dimensions of Oncology Nursing Care. Pittsburgh, PA: Oncology Nursing Press, Inc., 1999. 53-75.

63. Sinclair CT. The clinician’s letter of condolence. Program and abstracts of the 6th Annual Clinical Team Conference of the National Hospice and Palliative Care Organization; April 21-23, 205; Atlanta, Georgia.

64. Zurin LM, Surin HS. The Art of Condolence. New York, NY: Harper Collins Publishers; 1991.

65. Rushton, Cindy Hylton. Care-giver suffering in critical care nursing. Heart & Lung, May 1992, Vol. 21, No. 3.

66. Skimming, Sylvia A, et al. Executive Summary: Living and Healing During Life-Threatening Illness. Supportive Care of the Dying: A Coalition for Compassionate Care. June 1997. www.careofdying.org/Resources/Execsum.PDF

67. Rev. Richard B. Gilbert, PhD Editor, The World Pastoral Care Center. Responding to Grief: A Complete Resource Guide. Supplement #9 - 2005 http://www.griefwork.org/resources/wpccguide.pdf.

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XIV. Tool: Quality Care at the End of Life Survey*

Please rate the following aspects of quality end of life care based on how effective you believe our current care is at:

_____________________________________________________________________________________________________________________________________________________________________________________________________________________ .

STRUCTURE AND PROCESSES OF CARE Strongly StronglyDisagree Agree

1. The plan of care is based on patient/family goals with consideration of the changing benefits/burden of care. 1 2 3 4 5

2. Staff have the necessary knowledge and skills required to care for dying patients and their families. 1 2 3 4 5

3. There is effective continuity of care across settings (ICU, inpatient units, hospice). 1 2 3 4 5

PHYSICAL ASPECTS OF CARE Strongly StronglyDisagree Agree

4. Pain is effectively assessed and managed. 1 2 3 4 5

5. Other symptoms (e.g. dyspnea, agitation) are assessed and managed. 1 2 3 4 5

6. Consultation is available and effective in managing pain and other symptoms. 1 2 3 4 5

7. Treatment of pain and symptoms addresses physical, psychological, social and spiritual aspects and incorporates pharmacologic and nonpharmacologic/supportive therapies. 1 2 3 4 5

PSYCHOLOGICAL/PSYCHIATRIC ASPECTS OF CARE Strongly StronglyDisagree Agree

8. Consultation is available and effective by clinical psychology. 1 2 3 4 5

9. Consultation is available and effective by a psychiatrist. 1 2 3 4 5

10. Consultation is available and effective by staff(e.g. “Transitions” program) skilled in bereavement. 1 2 3 4 5

11. Assessment is used to identify people at risk of complicated grief and bereavement. 1 2 3 4 5

12. Bereavement services are routinely provided to families following the death of a patient. 1 2 3 4 5

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SOCIAL ASPECTS OF CARE Strongly StronglyDisagree Agree

13. Consultation is available and effective by clinical social work. 1 2 3 4 5

14. The plan of care reflects important information regarding family relationships. 1 2 3 4 5

15. Family meetings are conducted in a timely manner to provide information, assist in decision-making, determine wishes and enhance communication. 1 2 3 4 5

16. Family members are supported through this time of critical illness and death. 1 2 3 4 5

SPIRITUAL AND EXISTENTIAL ASPECTS OF CARE Strongly StronglyDisagree Agree

17. Staff are knowledgeable and sensitive to diverse religious/spiritual needs. 1 2 3 4 5

18. Spiritual assessment is used to identify preferences, rituals, beliefs and concerns. 1 2 3 4 5

19. Pastoral care/chaplaincy is available and effective. 1 2 3 4 5

CULTURAL ASPECTS OF CARE Strongly StronglyDisagree Agree

20. Cultural background, concerns and needs of the patient and family are elicited and documented. 1 2 3 4 5

21. Communication with patients and families is respectfulof their cultural preferences regarding disclosure, truth telling and decision making. 1 2 3 4 5

CARE OF THE IMMINENTLY DYING PATIENT Strongly StronglyDisagree Agree

22. The patient’s transition to active dying is recognized, documented and communicated appropriately to patient, family and staff. 1 2 3 4 5

23. Patient/family are offered choices when possible regarding place of death. 1 2 3 4 5

24. Families are educated regarding signs and symptoms of approaching death. 1 2 3 4 5

25. Emotional and spiritual support is provided to the patient and family during the dying process and bereavement period. 1 2 3 4 5

26. Optimum care is provided in the pronouncement of death, procedures for organ/tissue donation, offer of autopsy. 1 2 3 4 5

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ETHICAL ISSUES Strongly StronglyDisagree Agree

27. Patient or surrogate preferences are documented throughadvance care planning and are honored. 1 2 3 4 5

28. Ethical concerns are recognized and addressed in a timely way. 1 2 3 4 5

29. There is appropriate and timely referral to the Ethics Committee. 1 2 3 4 5

30. Do Not Resuscitate orders are written in a timely way. 1 2 3 4 5

31. Overall, please rate the quality of the following: Low HighQuality Quality

a. Your own practice in end of life care. 1 2 3 4 5

b. Your colleagues practice in end of life care 1 2 3 4 5

c. The institution’s overall care for dying patients. 1 2 3 4 5

32. Rate how frequently the following ethical dilemmas occur in your practice setting: Uncommon Very Common

a. Providing honest information vs. destroying hope 1 2 3 4 5

b. Preserving informed patient choices 1 2 3 4 5

c. Patient and family with differing goals 1 2 3 4 5

d. Use of advanced directives 1 2 3 4 5

e. Withholding/withdrawing life sustaining treatments (ventilators) 1 2 3 4 5

f. Withholding/withdrawing food/fluids 1 2 3 4 5

g. Discontinuing life supports 1 2 3 4 5

h. Fear of causing death by giving pain medications 1 2 3 4 5

i. Uncertainty about the patient’s prognosis 1 2 3 4 5

j. Providing futile care (care with no hope of success) 1 2 3 4 5

k. Continuing unnecessary lab work or diagnostic procedures 1 2 3 4 5

l. Continuing futile care in fear of lawsuits 1 2 3 4 5

33. Please rate the following barriers against optimumend of life care: Not a Severe

Barrier Barrier

a. Unknown prognosis 1 2 3 4 5

b. Time expenditure needed for dying patients 1 2 3 4 5

c. Staff avoidance of dying patients 1 2 3 4 5

d. Cultural factors influencing End of Life Care 1 2 3 4 5

e. Legal/Regulatory restrictions 1 2 3 4 5

f. Other cost considerations 1 2 3 4 5

g. Patient/family reluctance to accept death 1 2 3 4 5

h. Focus on cure/research versus comfort 1 2 3 4 5

i. Palliative care as a core value/mission 1 2 3 4 5

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Please provide the following information about your position at:_____________________________________________________________________________________________________

Profession: ____________________________________________________________________________________________________________________________________________________________________________________________________

! RN ! MD ! Social Worker ! Chaplain ! Other

Primary Areas of Your Practice: __________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

Please share below any additional comments/thoughts you have about care for patients and families facing death. We would welcome your thoughts about both the strengths and weaknesses of our care:

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

_______________________________________________________________________________________________________________________________________________________________________________________________________________________

* Note: This survey adapted and reprinted with permission from Betty Farrell and City Of Hope Medical Center

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_XV. Post Test1. Which of the following best describes palliative care?

A Prevents and relieves emotional, spiritual and physical sufferingB Addresses the needs of the facilityC Promotes inappropriate or unwanted careD Is appropriate only in hospice settings

2. Which of the following statements is incorrect regarding the disease state at the end of life?A The pattern of functional decline can differ by disease stateB The ability to interact with caregivers is not affected by the disease stateC The manifestation of symptoms can differ by disease state

3. Which of the following can be said about pain at the end of life?A Pain is a rare symptom for patients with cancerB Pain management does not lengthen the quantity of lifeC Unresolved emotional pain can exacerbate physical painD Pain should be relieved through medications, and non-pharmacological and cognitive-behavioral methods avoided

4. Which of the following is incorrect regarding dyspnea?A It is common in dementia and lung diseaseB It may result from anxiety or psychological distressC It is associated with the presence of painD The use of focused breathing techniques is considered the standard treatment in advanced disease

5. Which of the following can be said regarding anorexia during end of life?A Anorexia is not a natural part of the dying process and should be aggressively treatedB The causes of anorexia include infection, constipation and nausea C The patient should be encouraged to eat in order to promote physical, emotional and spiritual well-being D As the patient draws closer to death, providing artificial hydration and nutrition can create a sense of

well-being and diminish pain

6. Which of the following can be said regarding depression?A Depression is a normal part of the dying processB Depression is frequently over-diagnosed C Depression mimics the symptoms of illness and side effects of treatmentsD Depression is frequently over-treated

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7. Mr. Castroni is a former carpenter with poorly controlled diabetes mellitus and subsequent coronary artery disease, and chronic pain from a work-related accident. He has not been able to work for 3 months. He has had no contact with his former wife and children for over 20 yrs and has no other living relatives. He should beassessed for suffering in what aspects of care?A Physical and emotionalB Physical, spiritual, emotional and social C Physical, spiritual and socialD Physical and social

8. Advance Care Planning documents do not include which of the following?A Long term care preferencesB Do Not Resuscitate ordersC Preferences for organ donation D Medical power of attorney

9. Mrs. Jones is a 67-year old grandmother with stage IV ovarian cancer. When discussing the future course of her illness, she and her daughter begin to cry. Which of these should be your response?A Reassure themB Continue with the discussionC Be silent and let them cryD Ask them to stop crying as it upsets you

10. Which of the following is not true when caring for a patient expected to die within 24 hours?A Transfers from the ICU to a private patient room can add stress to the familyB The majority of patients will follow a “difficult road” to death, suffering hallucinations, agitation and seizures

before succumbing to coma and deathC Active dying generally occurs over a period of 10 to 14 days, although it can happen as quickly as 24 hoursD The healthcare team should maximize physical care and symptom control

Test ID: ENV1006

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XVI. Continuing Education ApplicationPlease print clearly and fill in all data to ensure accurate record-keeping.

To Care Always: Quality Care at the End of Life

LEARNING OBJECTIVES 1. Describe competencies related to the assessment and care of physical, psychosocial, cultural

and spiritual needs of patients and families.

2. Discuss ethical and professional principles of end of life care.

3. Identify appropriate legal and regulatory issues regarding end of life care.

CE CREDITS BY MAIL This program has been approved by Envision, Inc. for 1.0 Contact Hour, Program Number 009EOL10.

Envision, Inc. is an approved provider by the California State Board of Registered Nursing, Provider Number CEP 15437

Please complete this form in its entirety and submit to Envision, Inc. along with the $10.00 CE processing fee.Please mail completed forms and fee to: Envision Inc., 644 West Iris Drive, Nashville, TN 37204. CE certificateswill be mailed within four weeks after receipt of this completed form. Thank you.

Name:_______________________________________________________________________________________________________________________________________________________________________________________________________

Address:___________________________________________________________________________________________________________________________________________________________________________________________________

City:_____________________________________________________________________________________________________________________ State:_____________________________ Zip:

_____________________________________

Daytime Telehone:____________________________________________________________________________ E-mail:________________________________________________________________________________________

Date of Application:_______________/_______________/______________ RN/LPN License #: ___________________________________________________________________ State:______________________

TEST ANSWERS Circle only one choice for your answer to each question.

1. A B C D 6. A B C D

2. A B C D 7. A B C D

3. A B C D 8. A B C D

4. A B C D 9. A B C D

5. A B C D 10. A B C D

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XVII. Evaluation Form

PROGRAM EVALUATION Please circle the number that reflects your extent of agreement with each statement:

Evaluate this program in each of the categories by using the following rating scale: Poor Satisfactory Good Excellent

1. Program content resulted in achievement of the statedlearning objective #1 1 2 3 4

2. Program content resulted in achievement of the stated learning objective #2 1 2 3 4

3. Program content resulted in achievement of the stated learning objective #3 1 2 3 4

4. The content met my expectations 1 2 3 4

5. Information presented can be applied to my practice 1 2 3 4

6. Information provided is helpful in achieving my professional goals 1 2 3 4

7. Content was organized and easy to follow 1 2 3 4

8. The information presented is current and relative 1 2 3 4

9. This method of delivery met my learning needs 1 2 3 4

10. The content in this course was presented without bias of anycommercial product or drug 1 2 3 4

11. To complete this self paced program, which includes watching the video presentation and reviewing the study guide, it took me ____________________________________________________ minutes/hours.

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XVIII. Post Test Answers1. A. Prevents and relieves emotional, spiritual and physical suffering. Palliative care is appropriate in hospice and

acute settings, and is also guided by a sense of empathy, respect and concern for the patient and their family in all aspects of care; addresses the needs of the patient and family; and avoids unwanted or inappropriate care.

2. B. The ability to interact with caregivers is not affected by the disease state. In fact, the pattern of functional decline, manifestation of symptoms, and ability to interact with family or professional caregivers can all differamong patients of various disease states.

3. C. Unresolved emotional pain can exacerbate physical pain. Also, pain is a common symptom for patients with cancer, as well as advanced malignant disease; pain management has been shown to promote better quality of life and lengthen quantity of life; and all methods of treating pain should be considered, including pharmacological,non-pharmacological, and cognitive/behavioral.

4. D. The use of focused breathing techniques is considered the standard treatment in advanced disease. Opioids are very effective in relieving dyspnea and are considered the standard treatment in advanced disease.

5. B. The causes of anorexia include infection, constipation and nausea. Anorexia and dehydration can be distressing to the family and caregivers because giving or receiving nourishment has emotional, social and spiritual connotations; however, they are to be expected as a natural part of the dying process and in fact can produce ketones that create a sense of well-being and diminish pain. In fact, as the patient draws closer to death, providing artificial hydration and nutrition can carry significant risks and have limited, if any, benefits.

6. C. Mimics the symptoms of illness and side effects of treatments. The others are incorrect because depressionis not a normal part of the dying process. It is frequently under-diagnosed and under-treated, and if left untreated results in agitation, withdrawal and a strong wish for an early death.

7. B. Physical, spiritual, emotional and social aspects. Mr. Castroni has physical ailments that may cause him distress. Because he has not been able to work, he may have financial hardship, and the lack of family may indicate a need for support. In addition, his long-term lack of contact with family may indicate spiritual oremotional issues that may need to be resolved.

8. A. Long term care preferences. Advance Care Planning documents include Advance Directives, Medical Power of Attorney, Do Not Resuscitate orders, and preferences for organ donation.

9. C. Be silent and let them cry. Providing assurance, asking them to stop crying, or continuing on with the discussionsends a message of non-support for their emotional suffering. It is best to listen quietly at first, before continuing on with the discussion in order to provide empathy and establish trust.

10. B. The majority of patients will follow a “difficult road” to death, suffering hallucinations, agitation and seizures before succumbing to coma and death. In fact, the majority of patients will follow the “normal road” where the patient progresses from sleepiness to lethargy, and finally to a comatose state and death.

To Care Always


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To Care Always


4600 to care always - aurora pictures

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