This site is intended for health professionals only

Palliative care for patients with heart failure

Margaret Kendall
Consultant Nurse in Palliative Care
Warrington and Halton Hospitals NHS Foundation Trust

In this article, Margaret Kendall examines some of the issues concerning patients with heart failure and offers some symptom management guidelines to treat common symptoms at the end of life

Over the last 25 years there has been an upsurge of interest and research into care of the dying, which has resulted in improved symptom control and support. However, even with these developments, many patients with heart failure are unlikely to benefit from a referral to expert services such as palliative care.1 The National Service Framework (NSF) for Coronary Heart Disease recommends that a palliative care intervention be included in end-stage disease, and this is now widely recognised in the NHS. Similar recommendations have also been reiterated in the national End of Life Care Strategy.2,3

There is evidence to suggest that requests to provide a palliative care intervention for patients with a non-malignant diagnosis are becoming more frequent. However, in some quarters, there still appears to be reluctance from palliative care practitioners to accept a referral for these patients.
Reasons have been cited that palliative care practitioners do not have the skills and knowledge base to care for patients who do not have a diagnosis of cancer. Others appear fearful that a precedent will be set, and there is much discussion about palliative care services being overwhelmed with patents with non-malignant disease.

In an attempt to ascertain the level of complexity of need for patients with end-stage heart failure, and an estimate of the numbers who might potentially accept a referral to palliative care services, discussion with cardiology teams indicates that the fears of palliative care practitioners may be unfounded. Lewis and Stephens show that the needs of patients dying from heart failure are not dissimilar to those of other dying patients.4 Also, many patients with heart failure do not wish to lose contact with their healthcare professionals, indicating that a collaborative approach to care may be a more appropriate model.

Dying from heart failure
Of the estimated 60,000 patients who die annually from heart failure, only 4% receive specialist palliative care services. Heart failure patients often have poor symptom control, lack of psychological support, lack of open and honest communication with healthcare professionals, lack of practical support and limited access to financial resources.

In their study of 675 cases, Gibbs et al reported that pain was the most distressing symptom in over 50% of patients; dyspnoea was reported in 43%, low mood in 59% and anxiety reported in 45%.1 At least one in six patients in the study had symptom severity comparable to that of cancer patients.

Some patients with heart failure believe that there is reluctance among professionals to enter into conversation with them about death and dying, even though they would have welcomed a frank discussion. The findings from this study suggest we are not addressing the needs of patients with heart failure. An extrapolation of these findings to other life-limiting conditions could potentially produce similar data.

Symptom management
Ideally, the management of symptoms should continue alongside active cardiac management. Where it is appropriate for the patient to continue with active interventions for their cardiac symptoms, the palliative care needs of the individual should be sympathetic to this. The physical, psychological, emotional, spiritual and social aspects of the disease, as well as the needs of the family, should be addressed in an holistic manner. Disease progression in heart failure may take place over a number of years, and patients may feel the need to protect their family and friends from the burden.

Phenomenological research has highlighted that patients shield relatives from their worries and concerns:
"It makes me feel terrible. I'm not that sort of person you know. It's hard to ask for help. Have always been the one who did the things. I hate to ask anyone to do anything. I struggle on rather than ask. I mean it's not the man thing is it? I'm the head of the family. She shouldn't be doing things like that for me. It's my job to look after her. So you see I don't ask …
won't ask.

"I think that having this [heart failure] has had a big impact on her as well. It's changed her, life-wise for a start. She won't say. Like I won't say. I think she's heard more today than I have ever said but if you share things it puts more burden on them."

Another patient spoke about encouraging his wife to undertake "normal" activity while he remained at home as it gave him the opportunity to drop the façade he put on for his wife:

"I say to her, 'Go on, it'll do you good. I'll be OK'. There's always a fight then, she says she won't go and leave me, but I stick by my guns and eventually she goes. She rings about 10 times to see if I'm OK. But when she's not here I can be myself. I would like to go too, but you can't spoil it can you? Besides, it gives me chance to do nothing. That's all I really can do. For a bit I don't have to pretend."

Further studies have also indicated that the symptoms patients with heart failure experience have a significant impact on their lifestyle and quality of life. One of the major difficulties facing clinicians is how they recognise when a patient is dying as opposed to the exacerbation of their disease, which may be treatable.5 It has been recognised that the terminal phase of heart failure may be as bad as cancer. However, difficulties arise because of the unpredictable nature of heart failure.

Patients in NYHA IV (New York Heart Association classification) may have episodic admissions to hospital because of their worsening disease, but go on to be discharged again, having improved in functional status; therefore, diagnosing dying is difficult. Clinicians may be faced with the dilemma of whether the current episode of care may be the one that becomes a terminal event. Because of this uncertainty, planning for future care can be difficult. Patients may articulate this type of uncertainty too:

"It's the uncertainty you know. Sometimes I wake up in the night and can't breathe so good and it's frightening. Not knowing if this is going to be it, and stuff
like that."

"Everything has changed. You can't plan. There's no point saying on this day we'll go here or there, 'cos you don't know. Could be a bad day or might not be here. Who can say? So we don't plan, see?"

Advance care planning
One of the possible ways of dealing with uncertainty may be through the use of an advance care plan (ACP). At an appropriate time after the diagnosis of heart failure is made, and this can vary from patient to patient, they may begin to think about the consequences of becoming seriously ill or disabled. People might wish to take this opportunity to think about what a serious illness may mean for them. This could be the physical impact; although social, spiritual, psychological and financial aspects can be as important. It should be a process of discussion between the patient and those who provide care for them.

An ACP gives the opportunity to express views, preferences and wishes about future care and can take place in any setting, and by anyone. The ACP is a voluntary process and no one is under any pressure to take part. Documents such as Planning for your future care, published by the DH in March 2009, provide a simple explanation about advance care planning, and highlight different options that are open to patients. If an ACP is in place it can enable appropriate care to be given to patients at the end of their life in accordance with their wishes and in a place they have chosen.

Symptom specifics
Physical symptoms are frequently influenced by spiritual and psychosocial issues, so an holistic approach to care may well address many of the issues. Box 1 indicates the symptoms reported by informal carers of patients with heart failure.

[[Box 1 palliative care]]

Symptom management for diseases other than cancer is undoubtedly different; but this is not a justifiable reason to exclude non-cancer patients from specialist palliative care services. Instead, it highlights the need for continuous development of expertise to cope with the application to a variety of conditions.

In most cases, the use of opioids for patients with heart failure is permissible, although pain is often caused by a specific incident and thus is unpredictable. Many patients do not wish to take regular analgesics, often because of the amount of other medications they are already taking. It is more appropriate to use immediate-release preparations of opioids rather than sustained release because of their speed of action; although it should also be remembered that a high proportion of patients with heart failure may have non-specific generalised pain, such as musculoskeletal pain. Not all these pains may be opioid responsive, so alternative medications should also be considered.

The use of short-acting opioids, such as morphine sulphate, may not mirror the pattern of pain the patient is experiencing. Consideration should be made to newer preparations that demonstrate a "fast onset, short duration" curve. However, at this time these medications are only licensed for cancer pain but could be prescribed in palliative care as "off licence".

It is also important to remember that pain does not necessarily only have physical components. Psychological, spiritual and emotional issues can exacerbate pain and a full needs assessment of the pain should be undertaken. This could include the
following questions:

  • What does the pain feels like?
  • How often does it occur?
  • Are there any mitigating factors?
  • Is there any other pathology that needs to be taken into account?
  • Does the pain require a pharmacological intervention? Or would a non-pharmacological approach, eg, occupational therapist or physiotherapist, be more appropriate?

If starting immediate release morphine use a low dose, eg, 2.5 mg and repeat four-hourly as required. Low dose morphine is also beneficial for management of dyspnoea. However, as a precaution renal function should be checked before commencing opioids; if there is diminished renal function, advice about medications should be sought from the palliative care team.

Practitioners should be aware that the use of any regular analgesic will give rise to constipation. In heart failure the problem may be also be triggered by reduced intake of food and fluids, general immobility, and the use of diuretics. The problem is generally preventable if laxatives are prescribed as a prophylactic measure. A good, albeit old-fashioned, combination is senna 7.5 mg, two tablets nocte, with liquid paraffin plus magnesium hydroxide mixture BP (Milk of Magnesia) 10 ml bd. This is especially useful in helping to relieve co-existing gastric symptoms.

Nausea and vomiting
There may be multiple reasons why patients with heart failure experience these symptoms. The actual cause of the symptom should be ascertained on an individual basis. The use of anti-emetics is advisable, especially if the problem is related to the commencement of opioids. Regular administration, usually 30 minutes before meals, is advisable, although the use of cyclizine is contra-indicated in patients with heart failure as it may make the condition worse.

Psychological symptoms
Psychological issues and factors contributing to these include low mood, depression (present in a third of heart failure patients), insomnia and anxiety. Medication should be considered which may include:

  • Antidepressants, but avoid tricyclic antidepressants as they may have cardio-toxic side-effects.
  • Night sedation, eg, lorazepam 0.5-1 mg nocte.
  • Anxiolytics, eg, lorazapam 1 mg for panic attacks or diazepam 2 mg prn for anxiety.

It is important to explore the underlying issues and deal with these if possible by means of an holistic approach involving all members of the multidisciplinary team. It is often helpful to explore what the patient thinks is preventing them from sleeping, what makes them anxious or why they feel low in mood.

[[Practice pointers pall care]]

1. Gibbs LM, Khatri AK, Gibbs JS. Survey of specialist palliative care and heart failure: September 2004. Palliat Med 2006;20(6):603-9.
2. Department of Health (DH). NHS National Service Framework for Coronary Heart Disease. Modern standards and service models. London: DH; 2000.
3. Department of Health (DH). End of Life Care Strategy. London: DH; 2008.
4. Lewis C, Stephens B. Improving palliative care provision for patients with heart failure. Br J Nurs 2005;14(10):563-7.
5. Zambroski C. Managing beyond an uncertain disease trajectory: palliative care in advanced heart failure. Int J Palliat Nurs 2006;12(120):566-73.

Your comments (terms and conditions apply):

"WE have got to start telling patients what is wrong with them and making them more proactive in their treatment. Stop saying we can cure all" - Rosemary McDevitt