Managing dying with chronic heart failure

Size: px

Start display at page:

Download "Managing dying with chronic heart failure"

Aubrey Lloyd
6 years ago
Views:

1 Heart failure Managing dying with chronic heart failure Chronic heart failure (CHF) is predominantly a pathology of old age affecting 5% of those over 75 years of age. It is more common than cancer and the long-term survival is considerably worse than most cancers as annual mortality is 50% in severe cases. Around 60,000 of heart failure patients die annually but only 6% of those dying with CHF are referred to palliative care. 1 Dr Shobana Athimulam. Clinical Research Fellow Department of Gastroenterology and Neuroendocrine Tumour Unit, Royal Free Hospital, London Dr Shahid A Khan Consultant Physician, Lister Hospital, Corey s Mill Lane, Stevenage, Herts ShahidAK@aol.com Chronic heart failure (CHF) is a disease with slow physical decline with its hallmark being unpredictable disease exacerbations. Sudden cardiac death is common but many patients show a protracted downward spiral. Therefore principles of managing end of life issues in cancer patients do not apply to CHF. In CHF, most patients require a coordinated approach to care in their own homes and are often the most effective assessors of their needs. 1 The goal of managing these patients is to aim for a dignified death. 2 A timeline approach 1 3 The last few years For many patients with CHF, life can be an ongoing crisis. Slow transition makes it a life event rather than a crisis and no specific trajectory can be reliably anticipated. Patients accept disability and they gradually adjust to a slower pace of life to fit within the limitations imposed by CHF. For many, the carers and their physicians share passive acceptance of disability. This is one of the main issues, which contribute to the difficulties in identifying need for palliative care. The last few months The psychological aspect of a dying patient needs to be addressed during this period. The fear of dying does not increase with age and many elderly patients with CHF are well aware of the possibility of dying. With deterioration of symptoms some go through phases of depression or anger but some may exhibit denial. Most patients accept the outcome but are concerned about discomfort and dependency in later stages. Concern regarding the well-being of spouses is not uncommon. The last hours or days of life Appropriate prescribing is essential and gradual discontinuation of drugs commonly used in CHF should be considered. Withdrawal could be achieved without deterioration of symptoms with some medications such as hydralazine, nitrates, beta-blockers, spironolactone, particularly when faced with low blood pressure, which is common in these patients. Discuss the discontinuation of non essential drugs particularly the ones prescribed for prolongation of life (eg. statins) and prophylaxis (eg. aspirin and clopidogrel). The managing team should review the suitability of anticoagulants at this stage. Other medications such as ACE inhibitors may need to be discontinued in the last few days or last few hours of life. Where possible, loop diuretics are continued for symptomatic management for as long as possible. 26 September 2012 Midlife and Beyond GM2

2 Box 1: Systemic failure in heart failure Locomotor failure falls and instability Bone marrow failure Hb <10g/l Renal failure worsening creatinine, elevated potassium Brain failure delirium Respiratory failure hypoxia Gastrointestinal failure ascites, nausea, vomiting, constipation Hepatobiliary failure worsening liver function Dermatolgy failure pressure sores/leg ulcers Diagnosis of dying So when do we say the patient is dying with heart failure? In order to make this diagnosis, one should be able to recognise the accelerated phase of dying. This is a clinical skill and in CHF, unfortunately, is particularly difficult to recognise. The answer lies in recognition of the accelerated phase of dying when a patient develops multitude of systemic failures as shown in Box 1. However, there are several barriers to diagnosing accelerated phase of dying. Lack of a clear diagnosis leads to pursuance of unrealistic or futile interventions. Failure to recognise key symptoms and signs is not uncommon. One important factor is the managing team s concern about withdrawing or withholding active treatment based on fear of foreshortening life. Lack of knowledge about prescribing, poor communication skills, cultural and spiritual barriers and medico legal concerns Box 3: Symptoms in last hours or days Dyspnoea Pain Confusion Anxiety Depression Nausea & vomiting Constipation Urinary incontinence Box 2: Markers of poor prognosis Severe disease Frailty Poor nutritional status Multiple comorbidities Depression Impaired quality of life Extreme old age Social isolation all contribute to futile interventions and delay in instituting palliative care. 2 To overcome barriers in diagnosing dying patients, working as a member of a multi-professional team is essential. Sensitive communication and appropriate referrals to other members of the specialist team are paramount. Early recognition of the key symptoms and signs mentioned above is vital and avoiding nonessential investigations and treatment is crucial. 2 More often than not, the attending team concentrates on the distressing presentation of an acute exacerbation and overlooks the stepwise deterioration occurring in the long run. The involvement of palliative care in CHF when and why? Palliative care in CHF is based on managing distressing symptoms commonly encountered at the end of life. These symptoms are distressing but are often overlooked by health professionals as being relatively less significant. Coordination of multiple disciplines to address patients and carers concerns is at the heart of palliative care decision-making. 1 The World Health Organisation has recommended that palliative care be considered earlier along with other modalities, which prolong life in this disabling chronic disease. In CHF it is important not to look for a single transition point to switch to palliative care approach. Holistic assessments of needs could be linked with milestones throughout the patient s illness. Worsening symptoms, deteriorating renal functions, low blood pressure, falls, development of anaemia and hyponatraemia are milestones which should alert the management team to consider end of life care. 4 The trajectory slowly goes down and each time the patient comes out of hospital there is deterioration in function and symptoms, thus, GM2 Midlife and Beyond 2012 September 27

3 Heart failure Box 4: Management of end of life symptoms Pain Diamorphine 10mg sc via syringe driver over 24 hours and oramorph 2.5 5mg prn and titrate dose accordingly. Consult Palliative Care team. Nausea and vomiting Metoclopramide 10mg tds oral or sc to improve symptoms, or Haloperidol 1.5 3mg (oral or sc) over 24 hours, or Avoid cyclizine. Constipation Stool softener Docusate sodium mg orally as required Stimulant laxative senna 2 tablets daily or co-danthramer 1 2 capsules or 5 10mls orally as required Restlessness Midazolam - 2.5mg sc PRN or consider 10mg sc over 24 hours via syringe driver or Haloperidol 1.5 3mg orally over 24 hours or 2.5mg sc over 24 hours via syringe driver or Lorazepam 0.5 1mg over 24 hours or diazepam 2mg daily Dry mouth Sipping semi frozen drink, sucking ice chips or chewing gum Moisturising cream or soft paraffin to the lips, chewing pineapple or saliva substitute sprays Breathlessness Symptomatic oxygen administration Discontinue beta blockers Use of fan helps Cough Simple linctus or codeine linctus 5 10 mls orally PRN Low dose oral morphine solution may help. For retained secretions glycopyrronium 0.8mg 2.4mg over 24 hours via syringe driver Others: Implantable ICD should be switched off though pacing function should continue. making frequent hospital admission a significant milestone for poor prognosis. 1 Other markers for poor prognosis are detailed in Box 2 and should alert the team to consider palliative approach. Despite poor prognosis there is a tendency for doctors to overestimate survival in these patients. The last few days of life what can we do? Appropriate prescribing is required for symptoms in the last few days of life (Box 3). Over 75% of patients dying with CHF experience 28 September 2012 Midlife and Beyond GM2

4 pain. Oramorph 2.5-5mg orally every four hours or diamorphine 10mg s/c via syringe driver over 24 hours may be needed to control pain. This not only relieves pain, but may also relieve anxiety, distress and reduces myocardial oxygen demand. Transient venodilatation leads to reduction in preload, cardiac filling pressures, and pulmonary congestion and has added benefit of inhibiting cough. Non steroidal anti-inflammatory drugs should be avoided in patients with CHF. Nausea and vomiting are common symptoms in the last few days. They may be related to eating, gastric stasis, early satiety, hepatomegaly or ascites. Metoclopramide 10mg orally or subcutaneously may help to improve symptoms. Nausea predominantly caused by renal impairment or drugs, improves with haloperidol 1.5mg orally or subcutaneously. Cyclizine should be avoided as it may worsen heart failure. Constipation is a common symptom and a stool softener (eg. docusate sodium mg) may be required. A stimulant laxative (eg. senna 2 tablets or co-danthramer 1-2 capsules or 5 10mls) may be needed but avoid if the patient is incontinent of urine and or faeces. Restlessness is common in the terminal phase and usually requires mitazolam 2.5mg s/c or 10mg s/c via syringe driver over 24 hours. Haloperidol 1.5 3mg orally or 2.5mg s/c or via infusion over 24 hours may be needed. Anxiety is not uncommon and usually requires lorazepam 0.5 1mg or diazepam 2mg once a day. Dry mouth is very common in the last few days or hours of life. Sipping semi-frozen drinks, sucking ice chips or chewing gum may help. Moisturising cream or soft paraffin to the lips, chewing pineapple or saliva substitute sprays may be of help. Breathlessness is major problem in patients with CHF. There is no clear evidence that oxygen at rest or when ambulatory is beneficial in CHF. However it has a role in symptomatic relief in palliative care. Discontinuation of beta-blockers may be needed to help shortness of breath. Use of a fan often improves the symptoms of breathlessness. Cough is a difficult symptom to manage but is often attributed to ACE inhibitors. Cough suppressants for dry irritable cough eg. simple linctus 5 10mls may help. Codeine linctus 5 10mls or low dose oral morphine solution may be needed. Some patients respond to nebulised normal saline. Glycopyrronium bromide micrograms may be required for some patients to relieve symptoms of

respiratory distress. In terminally ill patients with CHF, Implantable Cardioverter Defibrillator (ICD) should be switched off though pacing function could continue.

6 respiratory distress. In terminally ill patients with CHF, Implantable Cardioverter Defibrillator (ICD) should be switched off though pacing function could continue. The resuscitation status of these patients should be reviewed and decided upon. Conclusion Medicine has progressed a great deal over the years but it has also contributed to prolonging the dying process. Diagnosing dying early and effective communication are key skills that needs to be learnt. A single point of transition to palliative care is impractical in CHF as the disease course is prolonged and unpredictable. Most patients do not need specialist palliative care but if required, a timely referral should be done and appropriate measures should be taken to ensure that the patient is comfortable at the terminal stage. There is a growing need to educate health workers and society that accepting death as a natural phenomenon, and not a failure in treatment, is the key to achieving a good death for these patients. Conflict of interest: none declared Reference 1. National End of Life Care Programme/ NHS improvement. End of life care in heart failure. A framework for implementation. (2010). 2. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ. 2003; 326(7379): Cowburn PJ, Cleland JGF, Coats, AJS, Comajda M. Risk stratification in chronic heart failure. Eur Heart J 1998; 19: SWL Supportive and Palliative Care Group and SWL Cardiac Network. Symptom control guidelines and key information in end stage heart failure. (2008/2009) GM2 Midlife and Beyond 2012 September 33

Care in the Last Days of Life

Care in the Last Days of Life Introduction This guideline is an aid to clinical decision making and good practice in person-centred care for patients who are deteriorating and at risk of dying. The patient