Palliative Care and Stroke Joan McCormack Clinical Nurse Specialist – Stroke 22 September 2011 My own experience. Drive for Stroke unit development.

Topics Stroke. Palliative Care Needs of Stroke Patients. Nutrition in Severe Stroke Patients. Withdrawal of Treatment. Questions.

Stroke A stroke is a condition where a blood clot or a ruptured blood vessel interrupts blood flow to an area of the brain. A lack of oxygen and glucose flowing to the brain leads to the death of brain cells and brain damage.

Larger strokes may lead to paralysis or death. The outcome after a stroke depends on where the stroke occurs and how much of the brain is affected. Smaller strokes may result in minor problems, such as weakness in an arm or leg. Larger strokes may lead to paralysis or death. 10 000 per second??? The outcome after a stroke depends on where the stroke occurs and how much of the brain is affected. Smaller strokes may result in minor problems, such as weakness in an arm or leg. Larger strokes may lead to paralysis or death.

STROKE FACTS 10,000 people in Ireland are admitted to hospital with stroke each year. Stroke is the third most common cause of death and the most common cause of acquired physical disability in Ireland. Stroke kills more than 2,000 people a year in Ireland – a higher death toll than from breast cancer, lung cancer and bowel cancer combined. Nearly one in three people will die within the first year after a stroke. Of those surviving, around 65 per cent will make a reasonable recovery. 6

BEAUMONT HOSPITAL June 2010 – June 2011 281 patients admitted with Stroke. 59 (21%) patients died. 11 died within 3 days 35 within 28 days 13 after 28 days June 2010 – December 2010 25 Died: 9 Referred to Palliative Care.

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

World Health Organisation PALLIATIVE CARE “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” World Health Organisation

Firstly, no mention of the word “terminal” Firstly, no mention of the word “terminal”. This suggests that palliative care has a role where there is a risk of death but no certainty that the patient will die. Secondly, reference is made to the need for early intervention.

WHAT ARE THE PALLIATIVE CARE NEEDS OF STROKE PATIENTS?

WHAT DOES THE RESEARCH SAY? The provision of palliative care to stroke patients presents many challenges. The needs of patients dying following a stroke are poorly investigated. The needs of stroke patients who die in the acute phase are different to those who’s death occurs at a later stage.

CHALLENGES Firstly, defining the dying stage in patients with stroke. Identification of end of life care needs is likely to run parallel with assessments of the patient’s functional status. Do we need to know? Should as some centres do, offer a more fluid relationship between curative and palliative care. Combined care. Or do we leave it too late???

Secondly, even when both medical and nursing staff feel that a patient might have palliative care needs, referral to a specialist palliative care service can be seen as inappropriate. E.g. upset families. Able to cope themselves. Also, bridging overwhelming PCT and deskilling`. May indicate high levels of awareness of the principles and practice of palliative care.

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

WHAT ARE THE PALLIATIVE CARE NEEDS OF STROKE PATIENTS? Dyspnoea or dyspnoea behaviours 81% Pain or pain behaviours 69% Mouth dryness 62% Constipation 38% Anxiety/sadness 26% Delirium 14% Sleep disorders 12% Mazzocato et al (2010) The last days of dying stroke patients. European Journal of Neurology. 17 (73-77)

Dyspnoea or dyspnoea behaviours Wheezing Laboured breathing Noisy respiratory tract secretions (death rattle) Tachypnoea Use of accessory respiratory muscles Death rattle – bronchial noises from secretions, infection, salivary secretions – loss of swallow and cough reflex. Subjective experience in non-verbal patients.

Pain and discomfort or pain and discomfort behaviours. Pain score > 2. Headache, central post stroke pain, co-morbidities e.g. arthritis. Sad facial expressions. Negative verbalisations. Rubbing of the body. NB – Risk of under recognition in non-verbal patients. Moaning. Movement. Few assessment scales for non-verbal patients.

Depression and anxiety. 50% low mood, anxiety or confusion. 20% expressed “life is not worth living”. High levels of post stroke depression – 30% Payne et al (2008) Palliative Care Nursing. 2nd Ed. McGraw Hill, Maidenhead. Payne 2008, funded to explore the PC needs of stroke patients. Need to debrief or psychological care.

Communication regarding prognosis. Communication between patients, family members and professionals was consistently highlighted as central to a positive experience of stroke. Accurate prognostication– uncertainty is inevitable. Honesty and clarity of information is required even when prognosis is bleak. When there is a shift in focus from active intervention to supportive care families want to be included in dialogue with professionals.

When to call in the Palliative Care Service? Symptom management. Ethical dilemmas. Communication.

NUTRITION IN SEVERE STROKE Dysphagia. B.H.S.S.T (Beaumont Hospital Swallow Screening Test). Speech and Language Therapists. Dietetics. They clarify the options for delivery of nutrition and hydration to inform decisions.

Of Note, Oral fluid and nutrition is part of core care and should not be withdrawn unless the patient refuses or is unable to participate. Clinically assisted nutrition and hydration are considered medical treatments and can be withheld or withdrawn if considered to be of no benefit to the patient.

How are decisions made? Multidisciplinary context. Involve the patient and family. Have the patient’s best interests at the fore. Information should be given in a clear and appropriate fashion. Clarity of the decision.

Patient’s wishes should be respected. Capacity. Consultant makes the decision. Understanding, retaining of info, risk and benefit. Assume capacity unless demo other.

Experience of hunger and thirst are difficult to establish after a severe stroke. Skin. Mucosa.

What are the risks of clinically assisted nutrition and hydration? Tube displacement. GI intolerance. Reflux. Increased secretions. Aspiration pneumonia. Pulmonary oedema IV site infections.

Clear information reduces confusion among multidisciplinary team members and the family

CONSENSUS?

Call in the Palliative Care Service?

Time limited trial of clinically assisted feeding?

Clinically assisted nutrition and hydration are considered medical treatments and can be withheld or withdrawn if considered not to be of benefit to the patient. Clear goals and objectives allow evaluation and the potential to withdraw treatment if the goals are not met.

Withdrawal of Treatment Dynamic and evolving situation. Discussion regarding futility of treatment. Capacity. Anxiety of family and staff regarding withdrawing life-sustaining treatment. Condition can be dynamic and evolving. Many discussion may need to be had.

Anxiety: Complex issues must be understood and documented. Often easier to understand not starting treatment as opposed to withdrawing it. No fully accurate method of predicting outcome after a severe stroke. Decision with the Consultant.

Do Not Resuscitate. Different to withdrawing medical support. Should not influence treatment including admission to stroke units. Should not influence nursing care provided.