End-stage care in COPD and heart failure
It's time the lessons of cancer were applied to people dying from other conditions, says Dr Louise Gibbs
The physical, psychological and social needs of people with end-stage chronic disease are rarely recognised and relieved, despite being prevalent and severe. For patients with COPD and heart failure these needs are prolonged because they live with significant disability for longer than those with cancer1,2.
Cancer patients, in comparison, have a much better structured and co-ordinated network of care. There is an expectation that assessment of cancer problems will not only cover physical but also emotional, psychological and spiritual areas and the need for social support. It is time that these lessons are replicated elsewhere.
How can we better achieve this? We can start by dispelling the myths about dying from COPD or heart failure (see table 2). The use of structured, routine assessment schedules helps ensure that all a patient's likely problems are revealed, rather than just their breathlessness and disease management. Tables 1 and 2 form the basis of such a schedule.
The management plan following such an assessment would then include symptomatic management of breathlessness, pain, nausea, constipation and anxiety/depression.
Pulmonary rehabilitation improves breathlessness in COPD and similar techniques also help in heart failure. In severe breathlessness, despite maximal other therapy, cautious use of regular codeine (60mg qds) or low-dose morphine (2.5-5mg four-hourly), or a trial of a benzodiazepine, such as lorazepam 0.5mg prn, should be safe provided the patient's renal function is good and they are not carbon dioxide retaining.
Pain from oedema of liver, gut or legs, or arthritis, for example, should be managed with regular paracetomol, weak opioids and strong opioids following the WHO pain ladder. Renal impairment can make the use of opioids more difficult. If in doubt, ask for palliative care advice. Avoid non-steroidal anti-inflammatories, even for brief periods, in all heart-failure patients and anyone with COPD and oedema or renal impairment.
This is likely to have a biochemical or drug-related cause, or be from gastric or liver congestion. Good choices of antiemetic are therefore haloperidol (1.5mg od or bd, 0.5mg in the very elderly) or metoclopramide (10-20mg tds), and these should be prescribed regularly.
Less good choices would be domperidone, which has very variable absorption, or cyclizine in heart failure, which is strongly anticholinergic.
Anxiety and depression
These are frequently overlooked, yet dramatically worsen hospital readmission and mortality rates. Either non-drug or drug approaches may help.
Choosing an antidepressant may not be straightforward: tricyclics are potentially cardiotoxic; SSRIs have recently been linked to gastrointestinal bleeding; some SSRIs like fluoxetine have many drug interactions.
I most often use sertraline or mirtazapine, which are less likely to interact with other drugs commonly used in palliative care.
Many patients welcome the opportunity to discuss questions such as resuscitation or their need to make a will.
Some people with heart failure may wish to know that they have a high chance of dying suddenly even with relatively 'mild' disease.
Many health care professionals shy away from this, worried they will make matters worse or say the 'wrong' thing. The uncertainties of the future for any individual are very real and make such discussions difficult, but by not doing so we are denying patients a chance to even explore them.
In US heart failure management guidelines, discussions regarding sudden death and resuscitation preferences are mandatory.
The UK guidelines do not go nearly this far, but support more open communication about such issues. Phrases such as 'This illness will probably shorten your life' can be enough to give those who want to discuss these issues the confidence to start.
Provided the patient leads the conversation, the chances of giving them more information than they want is much lower.
Other problems such as fatigue, memory loss and confusion are much harder to assist with. These patients are also those most likely to be severely physically restricted in activities of daily living.
Involving social services, occupational and physiotherapy services and voluntary organisations such as Crossroads should be considered in all such patients.
Local resources such as pulmonary rehabilitation, specialist heart failure, palliative care, community occupational and physiotherapy services vary widely.
Developing good links with those you have and lobbying for those you don't may make a real difference.
Specialist palliative care
There is significant variation: some hospices will not take on patients with COPD or heart failure whereas others have established pulmonary rehabilitation services.
Most will now accept referrals of patients with various non-malignant conditions with extraordinary need, be it for short-term intervention, advice or terminal care. Using information or resources from other initiatives may help.
The Coronary Heart Disease Collaborative is currently developing a supportive and palliative care initiative. Many practices will already be working with the Gold Standards Framework through Macmillan and the Cancer Services Collaborative, using their tools to help overcome the barriers to providing good palliative care for people with cancer. These tools can be adapted for patients with end-stage COPD or heart failure.
Palliative care for patients with cancer has come a long way in the last four decades. Hopefully it won't take as long to improve the palliation of patients with COPD and heart failure.
Louise Gibbs is consultant palliative physician, St Christopher's Hospice, London
1 Anderson H et al. The concerns of patients under palliative care and a heart failure clinic are not being met. Palliat Med 2001;15:279-86
2 Teno JM et al. Dying trajectory in
the last year of life: does cancer
trajectory fit other diseases?
J Palliat Med 2001;4:457-64
3 Hanratty B et al. Doctors' perceptions of palliative care for heart failure: focus group study. BMJ 2002;325:581-5
4 Rogers AE et al. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ 2000;321(7261):605-7
5 Morgan DJ et al. Prognosis in COPD. Ignorance is bliss? (abstract)
E Resp J 2002;264
6 Johnson MJ. Morphine for the relief of breathlessness in patients with chronic heart failure a pilot study.
Eur J Heart Failure 2002;4:753-6
7 NICE Guideline 12. Management of chronic obstructive pulmonary disease in adults in primary and secondary care