Palliative Care and StrokePalliative Care and Stroke

Joan McCormackJoan McCormackClinical Nurse Specialist – StrokeClinical Nurse Specialist – Stroke

22 September 201122 September 2011

TopicsTopics• Stroke.Stroke.• Palliative Care Needs of Stroke Palliative Care Needs of Stroke

Patients.Patients.• Nutrition in Severe Stroke Patients.Nutrition in Severe Stroke Patients.• Withdrawal of Treatment.Withdrawal of Treatment.• Questions.Questions.

Stroke Stroke A A strokestroke is a condition where a blood clot is a condition where a blood clot

or a ruptured blood vessel interrupts blood or a ruptured blood vessel interrupts blood flow to an area of the brain.flow to an area of the brain.

A lack of oxygen and glucose flowing to the A lack of oxygen and glucose flowing to the brain leads to the death of brain cells and brain leads to the death of brain cells and brain damage. brain damage.

• The outcome after a stroke depends The outcome after a stroke depends

on where the stroke occurs and how on where the stroke occurs and how much of the brain is affected. much of the brain is affected.

• Smaller strokes may result in minor Smaller strokes may result in minor problems, such as weakness in an problems, such as weakness in an arm or leg. arm or leg.

• Larger strokes may lead to paralysis Larger strokes may lead to paralysis or death. or death.

STROKE FACTSSTROKE FACTS10,000 people in Ireland are admitted to hospital 10,000 people in Ireland are admitted to hospital

with stroke each year. with stroke each year. Stroke is the third most common cause of death Stroke is the third most common cause of death

and the most common cause of acquired and the most common cause of acquired physical disability in Ireland. physical disability in Ireland.

Stroke kills more than 2,000 people a year in Stroke kills more than 2,000 people a year in Ireland – a higher death toll than from breast Ireland – a higher death toll than from breast cancer, lung cancer and bowel cancer combined. cancer, lung cancer and bowel cancer combined.

Nearly one in three people will die within the first Nearly one in three people will die within the first year after a stroke. Of those surviving, around year after a stroke. Of those surviving, around 65 per cent will make a reasonable recovery. 65 per cent will make a reasonable recovery.

BEAUMONT HOSPITAL BEAUMONT HOSPITAL June 2010 – June 2011June 2010 – June 2011

281 patients admitted with Stroke.281 patients admitted with Stroke.

59 (21%) patients died.59 (21%) patients died.• 11 died within 3 days11 died within 3 days• 35 within 28 days35 within 28 days• 13 after 28 days 13 after 28 days

June 2010 – December 2010 June 2010 – December 2010 25 Died: 9 Referred to Palliative Care.25 Died: 9 Referred to Palliative Care.

Poor prognostic indicators:Poor prognostic indicators:• Advanced age.Advanced age.• Severity of the stroke.Severity of the stroke.• Elevated BP, Blood Glucose, Elevated BP, Blood Glucose,

Temperature.Temperature.• Seizures.Seizures.

Irish Heart Foundation: Council for Stroke

• All staff who care for patients with life-limiting non-malignant diseases including severe stroke, should work in a collaborative manner so that the patients‘ care needs are met in appropriate settings.

• Acute stroke patients should have access to specialist palliative care services as needed.

• People with stroke who are dying and their families should have care that is consistent with the principles and philosophies of palliative care.

PALLIATIVE CARE PALLIATIVE CARE

““an approach that improves the quality of life of an approach that improves the quality of life of patients and their families facing the patients and their families facing the

problems associated with life-threatening problems associated with life-threatening illness, through the prevention and relief of illness, through the prevention and relief of

suffering by means of early identification and suffering by means of early identification and impeccable assessment and treatment of pain impeccable assessment and treatment of pain

and other problems, physical, psychosocial and other problems, physical, psychosocial and spiritual”and spiritual”

World Health Organisation World Health Organisation

Firstly, no mention of the word Firstly, no mention of the word “terminal”. This suggests that “terminal”. This suggests that palliative care has a role where there palliative care has a role where there is a risk of death but no certainty is a risk of death but no certainty that the patient will die.that the patient will die.

Secondly, reference is made to the Secondly, reference is made to the need for early intervention. need for early intervention.

WHAT ARE THE PALLIATIVE WHAT ARE THE PALLIATIVE CARE NEEDS OF STROKE CARE NEEDS OF STROKE

PATIENTS?PATIENTS?

WHAT DOES THE RESEARCH WHAT DOES THE RESEARCH SAY?SAY?

• The provision of palliative care to stroke The provision of palliative care to stroke patients presents many challenges.patients presents many challenges.

• The needs of patients dying following a The needs of patients dying following a stroke are poorly investigated.stroke are poorly investigated.

• The needs of stroke patients who die in The needs of stroke patients who die in the acute phase are different to those the acute phase are different to those who’s death occurs at a later stage.who’s death occurs at a later stage.

CHALLENGESCHALLENGES Firstly, defining the dying stage in Firstly, defining the dying stage in

patients with stroke. patients with stroke.

Identification of end of life care needs is Identification of end of life care needs is likely to run parallel with assessments of likely to run parallel with assessments of the patient’s functional status.the patient’s functional status.

Secondly, even when both medical and Secondly, even when both medical and nursing staff feel that a patient might nursing staff feel that a patient might have palliative care needs, referral to have palliative care needs, referral to a specialist palliative care service a specialist palliative care service can be seen as inappropriate.can be seen as inappropriate.

Thirdly, stroke is by definition a Thirdly, stroke is by definition a condition that occurs suddenly often condition that occurs suddenly often leaving the patient with leaving the patient with communication problems due to communication problems due to decreased consciousness and speech decreased consciousness and speech problems. Therefore, end of life problems. Therefore, end of life decisions are often made on behalf decisions are often made on behalf of the patient.of the patient.

WHAT ARE THE PALLIATIVE WHAT ARE THE PALLIATIVE CARE NEEDS OF STROKE CARE NEEDS OF STROKE

PATIENTS?PATIENTS?

Dyspnoea or dyspnoea behaviours 81%Dyspnoea or dyspnoea behaviours 81%

Pain or pain behaviours 69%Pain or pain behaviours 69%

Mouth dryness 62%Mouth dryness 62%

Constipation 38%Constipation 38%

Anxiety/sadness 26%Anxiety/sadness 26%

Delirium 14%Delirium 14%

Sleep disorders 12%Sleep disorders 12%Mazzocato et al (2010) The last days of dying stroke patients. Mazzocato et al (2010) The last days of dying stroke patients. European Journal of NeurologyEuropean Journal of Neurology. 17 (73-77). 17 (73-77)

Dyspnoea or dyspnoea behavioursDyspnoea or dyspnoea behaviours

• WheezingWheezing• Laboured breathingLaboured breathing• Noisy respiratory tract secretions (death rattle)Noisy respiratory tract secretions (death rattle)• TachypnoeaTachypnoea• Use of accessory respiratory musclesUse of accessory respiratory muscles

Pain and discomfort or pain and Pain and discomfort or pain and discomfort behaviours.discomfort behaviours.

• Pain score > 2. Headache, central post stroke Pain score > 2. Headache, central post stroke pain, co-morbidities e.g. arthritis.pain, co-morbidities e.g. arthritis.

• Sad facial expressions.Sad facial expressions.• Negative verbalisations.Negative verbalisations.• Rubbing of the body.Rubbing of the body.

NB – Risk of under recognition in non-verbal NB – Risk of under recognition in non-verbal patients. patients.

Depression and anxiety.Depression and anxiety.

50% low mood, anxiety or confusion.50% low mood, anxiety or confusion.

20% expressed “life is not worth living”.20% expressed “life is not worth living”.

High levels of post stroke depression – 30%High levels of post stroke depression – 30%

Payne et al (2008) Palliative Care Nursing. 2Payne et al (2008) Palliative Care Nursing. 2ndnd Ed. McGraw Hill, Ed. McGraw Hill, Maidenhead.Maidenhead.

Communication regarding Communication regarding prognosis.prognosis.

Communication between patients, family members and Communication between patients, family members and professionals was consistently highlighted as central to a professionals was consistently highlighted as central to a positive experience of stroke.positive experience of stroke.

Accurate prognostication– uncertainty is inevitable.Accurate prognostication– uncertainty is inevitable.

Honesty and clarity of information is required even when Honesty and clarity of information is required even when prognosis is bleak.prognosis is bleak.

When there is a shift in focus from active intervention to When there is a shift in focus from active intervention to supportive care families want to be included in dialogue supportive care families want to be included in dialogue with professionals.with professionals.

When to call in the Palliative When to call in the Palliative Care Service?Care Service?

Symptom management.Symptom management.

Ethical dilemmas.Ethical dilemmas.

Communication.Communication.

NUTRITION IN SEVERE NUTRITION IN SEVERE STROKESTROKE

Dysphagia.Dysphagia.

B.H.S.S.T (B.H.S.S.T (Beaumont Hospital Swallow Screening Test).Beaumont Hospital Swallow Screening Test).

Speech and Language Therapists.Speech and Language Therapists.

Dietetics.Dietetics.

Of Note,Of Note,

• Oral fluid and nutrition is part of core care Oral fluid and nutrition is part of core care and should not be withdrawn unless the and should not be withdrawn unless the patient refuses or is unable to participate.patient refuses or is unable to participate.

• Clinically assisted nutrition and hydration Clinically assisted nutrition and hydration are considered medical treatments and are considered medical treatments and can be withheld or withdrawn if can be withheld or withdrawn if considered to be of no benefit to the considered to be of no benefit to the patient.patient.

How are decisions made?How are decisions made?Multidisciplinary context.Multidisciplinary context.

Involve the patient and family.Involve the patient and family.

Have the patient’s best interests at the Have the patient’s best interests at the fore.fore.

Patient’s wishes should be respected.Patient’s wishes should be respected.

Capacity.Capacity.

Consultant makes the decision.Consultant makes the decision.

Experience of hunger and Experience of hunger and thirst are difficult to establish thirst are difficult to establish

after a severe stroke.after a severe stroke.

What are the risks of clinically What are the risks of clinically assisted nutrition and assisted nutrition and

hydration?hydration?• Tube displacement.Tube displacement.• GI intolerance.GI intolerance.• Reflux.Reflux.• Increased secretions.Increased secretions.• Aspiration pneumonia.Aspiration pneumonia.• Pulmonary oedemaPulmonary oedema• IV site infections.IV site infections.

Clear information reduces Clear information reduces confusion among confusion among multidisciplinary team members multidisciplinary team members and the familyand the family

CONSENSUS?CONSENSUS?

Call in the Palliative Care Call in the Palliative Care Service?Service?

Time limited trial of clinically Time limited trial of clinically assisted feeding?assisted feeding?

Clinically assisted nutrition and Clinically assisted nutrition and hydration are considered medical hydration are considered medical treatments and can be withheld or treatments and can be withheld or withdrawn if considered not to be of withdrawn if considered not to be of benefit to the patient.benefit to the patient.

Clear goals and objectives allow Clear goals and objectives allow evaluation and the potential to evaluation and the potential to withdraw treatment if the goals are withdraw treatment if the goals are not met.not met.

Withdrawal of TreatmentWithdrawal of Treatment Dynamic and evolving situation.Dynamic and evolving situation.

Discussion regarding futility of treatment.Discussion regarding futility of treatment.

Capacity.Capacity.

Anxiety of family and staff regarding Anxiety of family and staff regarding withdrawing life-sustaining treatment.withdrawing life-sustaining treatment.

Anxiety:Anxiety:Complex issues must be understood and Complex issues must be understood and

documented.documented.Often easier to understand not starting Often easier to understand not starting

treatment as opposed to withdrawing treatment as opposed to withdrawing it.it.

No fully accurate method of predicting No fully accurate method of predicting outcome after a severe stroke.outcome after a severe stroke.

Decision with the Consultant.Decision with the Consultant.

Do Not Resuscitate.Do Not Resuscitate.Different to withdrawing medical support.Different to withdrawing medical support.

Should not influence treatment including Should not influence treatment including admission to stroke units.admission to stroke units.

Should not influence nursing care Should not influence nursing care provided.provided.