Improving end-of-life care in the long term care setting

David Casarett MD MA

Division of Geriatrics

Center for Bioethics

University of Pennsylvania

Mr. Palmer:

Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

He currently lives in a skilled care facility, where he is dependent on others for most activities of daily living.

He has had 2 hospitalizations in the past 6 months; one for a heart failure exacerbation and one for presumed aspiration pneumonia.

He has lost 10 lbs. in the past 6 months and is only eating 50% of meals, despite an intensive feeding program.

Mr. Palmer

Long term care resident with several serious chronic illnesses

Is highly likely to experience events in the near future that will:» Compromise his health » Result in death » Result in a significant decline in function

Decisions that need to be made

Advance directive preferencesDNRTransfer/hospitalizationArtificial Nutrition and Hydration

Usual approaches:

Medical decisions (without input)» “Your father is losing weight, we need to put a

feeding tube in”

Leave decision up to resident/family:» “Your father is losing weight, what do you want us

to do?”» Your father is very sick, do you want us to do

everything to keep him alive?”

Hazards of the “usual approach”

Decisions that are not consistent with resident/family goals and preferences» Too much treatment» Too little treatment

Dissatisfaction with careUnpleasant memories of the residents last

months of life

An approach to decision-making discussions near the end of life

1. Identify the decision-maker

2. Assess prognosis

3. Define goals

4. Clarify preferences

5. Determine a plan

6. Reevaluate and update

7. One example: Decisions about ANH

Mr. Palmer:

An 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

Currently lives in a skilled care facility, where he is dependent on others for most activities of daily living.

2 hospitalizations in the past 6 months. He has lost 10 lbs. in the past 6 months and is only

eating 50% of meals. Need for a decision about ANH (and other treatment

options).

Decision-making: Who is the decision-maker?

Does the resident have adequate decision-making capacity?

Is there someone who can share decision-making?

How should a family member make decisions on the resident’s behalf?

Does this patient have decision-making capacity?

Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

He currently lives in a skilled care facility, where he is dependent on others for most activities of daily living.

Can he make decisions about a feeding tube?

Decision-making capacity and competence

Competence» Decided by psychiatrist (usually)» Decision validated in court» Global implications

Decision-making capacity» Decided in clinical setting» Decided by clinical team» Decision-specific

Who can assess:Decision-making capacity?

Competence?

Competence:

Psychiatrists

Capacity:

Physicians

Nurses

Social workers

Chaplains

Speech therapists……

The theory of informed consent and decision-making capacity

Informed consent is justified by a patient’s right to autonomy, and our obligation to respect autonomy.

Informed consent requires:» Adequate disclosure of relevant information» Freedom from outside influences in making a

decision » Decision-making capacity: Ability to learn and use

information to make that decision• Respect autonomy by honoring the decision of a patient

with capacity• Respect autonomy by turning to a surrogate when a

patient lacks capacity

The skills of assessment:CHF vs. capacity

Congestive heart failure signs and symptoms:

» Elevated jugular venous

pressure» Dyspnea, orthopnea» Rales» S3» Peripheral edema

Decision-making capacity signs and symptoms:

?

Assessing capacity: pathophysiology

Heart function requires:» Clearing blood from

venous circulation» Delivery of blood to vital

organs

Assessed by physical examination

Decision-making capacity requires:» Understanding» Appreciation» Reasoning» Ability to express a choice

Assessed by interview

Decision-making capacity

Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

He is able to understand that he has several serious illnesses and seems to appreciate that these illnesses may result in his death.

He understands the risks and potential benefits of a feeding tube.

But he cannot weigh those risks and potential benefits to reach a decision

Shared decision-making

More common in:» Older patients» Women» Married patients» African-American patients» Hispanic patients» Patients with cognitive impairment

0

5

10

15

20

25

30

35

40

Patient madedecision

Patientmostly made

thedecisision

The decisionwas shared

equally

Familymostly madethe decision

Family madethe decision

Pro

po

rti

on

(%

)

Who is involved in end of life discussions?

RN observation

Mr. Palmer:

Mr. Palmer’s daughter visits frequently, often bringing his grandchildren. She often participates in decisions and steps in to make decisions on his behalf when he is unable to (e.g. decisions about hospitalization)

When the resident can’t make decisions:Surrogate decision-making standards

Pure autonomy» What a patient wants» Uses advance directives

Substituted judgment» What a patient would have wanted» Uses previous statements

Best interests» What would be best for a patient

Mr. Palmer

84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

Able to participate in decisions, but lacks full decision-making capacity.

Decisions about a feeding tube would be made jointly with daughter.

Prognosis: Challenges of recognizing the “end of life”

84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

He currently lives in a skilled care facility, where he is dependent on others for most activities of daily living.

He has had 2 hospitalizations in the past 6 months; one for a heart failure exacerbation and one for presumed aspiration pneumonia.

Why is prognosis information valuable?

Ability to make informed decisions about feeding tubes and other treatments

Guidance for practical decisions (financial)Reconciliation/chance to say goodbyeAlleviation of stress that not knowing incursReluctance of families to discuss plans when

prognosis is unknown

Do patients want to discuss prognosis?

1982 data 96 % of Americans wanted to know if they had cancer and 85% reported wanting to know if prognosis <1 year» Annas, G. NEJM 330:223-225

44% of bereaved family members of elderly deceased cited improved communication as very important.» Hanson, L. JAGS 1997;45:1339-44.

85% of cancer patients stated that they wanted all information, good and bad.» Cassileth, B Ann Intern Med 1980; 92:832-836

How accurate are clinicians in prognostication?

Study Median Estimate

Median

Actual

Estimate/

Actual

Parkes, 1972 4.5 2.0 1.8

Heyse-Moore,

1987

8 2 4

Forster, 1988 7 3.5 2

Christakis,2000 N/A N/A 5.3

Functional status: predictive value

COPD: New dependency in 2 ADLs in 2 years (Connors 1996)

Dementia: Inability to ambulate (Luchins, 1997)

ECOG/Karnofsky performance status (Mor 1984; Conill 1990; Sloan 2001)

Trajectories of functional decline

Cancer

CHF/COPD

Dementia

“Checkered flags”-General

“Would I be surprised if this patient were to die in 6 months?”» Good idea» Widely used» Prognostic value unclear

Cancer

Cancer with metastatic disease: brain, pleura, pericardium, carcinomatous meningitis (Vigano, 2000)

Malignant bowel obstruction (Vigano, 2000)Cancer with hypercalcemia (not multiple

myeloma)(Vigano, 2000)Symptoms: Anorexia, dyspnea, dysphagia

(Maltoni, 1997)

Non-cancer diagnoses

Dementia:» Few/no meaningful words (Luchins, 1997)» Acute hospitalization (Morrison, 2000)

CHF:» Dyspnea at rest (Pfeffer, 1992)» Hyponatrema and renal insufficiency attributable to

decreased cardiac output (Alla, 2000) COPD:

» Decline in FEV1>40cc/year OR FEV1<1.00 (Traver, 1979)» ICU admission for exacerbation (Seneff, 1995)» Loss of 2 ADLS/past year (Connors, 1996)» Chronic hypercapnea (Costello, 1997)

Cirrhosis with any renal insufficiency

Prognosis: Mr. Palmer

An 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer.

He currently lives in a skilled care facility, where he is dependent on others for most activities of daily living.

He has had 2 hospitalizations in the past 6 months; one for a heart failure exacerbation and one for presumed aspiration pneumonia.

Not imminently dying, but limited prognosis (< 1 year)

Goals for care: what’s important?

IdentityPreferencesLocus of controlValues

Why discuss goals?

SUPPORT study, SUPPORT investigators 1995:» 47% of physicians knew when their patients wanted to

avoid CPR» 40% of patient/family-physician pairs discussed CPR

Medicare resource use study, Teno 2002:» 20% of seriously ill Medicare patients said their care

was too aggressive

The Interrelationshipof Goals

Historical sequencingMultiple goals often apply simultaneouslyGoals are often contradictoryCertain goals may take priority over others

Common goals (not mutually exclusive)

SafetyComfortProlong lifeSense of closureStrengthen interpersonal relationshipsImprove/maintain function

Relieve Suffering (Hospice)Relieve Suffering (Hospice)Relieve Suffering (Palliative Care)Relieve Suffering (Palliative Care)

Curative / Life-prolonging TherapyCurative / Life-prolonging Therapy

PresentationPresentation DeathDeath

Informed consent and goals for care

Informed consent requires:» Adequate information about:

• The proposed treatment option• Its risks and potential benefits• Medically appropriate alternatives

» Decision-making capacity» Absence of inappropriate influence:

• Inducement• Coercion

Hospice

Palliative care

6-Step Protocol to Negotiate Goals of Care…

1. Create the right setting

2. Determine what the patient and family know

3. Ask how much they want to know and discuss with you

4. Explore expectations and hopes

5. Suggest realistic goals

6. Respond empathetically

Mr. Palmer

An informal meeting was held with the Nurse Practitioner on the unit, Mr. Palmer, and his daughter.

The discussion focused on Mr. Palmer’s goals for care, negotiated between the NP, Mr. Palmer, and his daughter.

Central goals were:» To stay as comfortable as possible» To spend time with family» To maintain function and independence as much

as possible

Defining preferences: general principles

Begin with goalsFocus on goalsEncourage consistency

» With goals» With other preferences

Mr. Palmer: defining preferences for care

CPRICU admissionIV antibioticsHospiceHospital transferArtificial Nutrition and Hydration

Preferences about Artificial Nutrition and Hydration (ANH)

Difficult because of:» Strong beliefs

• Families• Staff

» Regulatory pressures» Reimbursement incentives» Fears about “starving” residents

ANH: Medical background

“Feeding” administered by:» Gastrostomy/Jejunostomy tube

• Placed through abdominal wall • Endoscopic/surgical (short hospital stay)

» Parenteral line• Central line• Long-term peripheral line• Both require medical/surgical procedure for

placement

Goals of ANH Mr. Palmer’s goals

To improve survival To promote better

nutrition To promote weight

gain/prevent weight loss To prevent aspiration

pneumonia To promote wound

healing

To stay as comfortable as possible

To spend time with family

To maintain function and independence as much as possible

Does ANH “work”?

Yes:» PVS (survival)» Selected rare GI conditions (survival)

Maybe:» Post-surgery (nutrition, wound healing)» Acute conditions (intensive care unit/burn unit)

Probably not» Dementia (any indication)

Will ANH help to achieve Mr. Palmer’s goals?

Goals» Increased comfort?» Time with family?» Maintain function and independence?

Probably not

Risks of ANH? (selected examples)

Procedural risks (surgery)Self-removal (bleeding, peritonitis)Nausea, bloating, abdominal pain, diarrheaAspiration pneumoniaIn patients with dementia: Need for physical

restraints:» Delirium» Pressure ulcers» Weakness/debility

History of ANH: Law and ethics

Surgical/technical procedure with uncertain benefits, significant risks

Decisions should be made by patients/families using the same approach that is applied to other medical decisions:» Risks/Burdens» Potential benefits» Patient preferences

Evidence in:» Past case law (Brophy, Quinlan, Cruzan)» Incorporation into the practice of clinical bioethics

ANH preferences

Decisions about ANH should be made in the same way, based on the same information, as decisions about other treatment are.

Goals and preferences: Cultural Differences

Who gets the information?How to talk about information?Who makes decisions?Ask the patientConsider a family meeting

Mr. Palmer

A family meeting was held, which included Mr. Palmer’s daughter, the interdisciplinary team and the attending physician. The meeting was held in a room that could accommodate Mr. Palmer as well, so he could be present.

Family meeting

The group discussed:» Mr. Palmer’s goals» Mr. Palmer’s preferences as far as they could be

determined» Mr. Palmer’s daughter’s wishes based on what

she knew of her father and his goals» The risks and potential benefits of a feeding tube

Mr. Palmer

They decide that:» A feeding tube offers a balance of risks and

potential benefits that Mr. Palmer does not want» A feeding tube would not be consistent with Mr.

Palmer’s goals» He would not want a feeding tube if he were able

to make the decision on his own

Mr. Palmer

Care plan:» Continued intensive hand feeding» Dietary supplements» Understanding that continued weight loss is

expected and inevitable» Focus on Mr. Palmer’s goals with plan of comfort

care.

Approach to decision-making near the end of life

1. Identify the decision-maker

2. Assess prognosis

3. Define goals

4. Clarify preferences

5. Determine a plan

6. Reevaluate and update

7. One example: Decisions about ANH