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The study of ethics and the use of ethical principles are of great value when dealing with cancer patients, especially the difficult decisions that have to be made regarding life and death. This is part of the normal approach for cancer patients, but it tends to be used less often in non-malignant palliative care.
Part of the difficulty is that many diseases, such as end-stage heart failure and COPD, end-stage renal disease, motor neurone disease and other degenerative neurological diseases, have not been considered palliative until quite recently. Many clinicians still struggle with this as a concept, although it is widely accepted that the prognosis in advanced chronic diseases can be poor and can have similar symptoms to some cancers.1
The principles of palliative care concern the provision of symptom control, psychological, social and spiritual care. These principles should apply to all patients who are dying, even if they are not in the final phase. However, these principles should not be reserved for patients dying of cancer-related disease. Everybody should be allowed to die in peace and with dignity.
However, it often seems easier to make this decision for a cancer patient than for a non-malignant case. This may be because in cancer, there is often an expectation that the patient will die. In non-cancer patients, the seriousness of the condition and the poor prognosis may not be discussed. Patients and families expect that more can be done to treat a non-malignant condition.
In some cases, it is the healthcare professionals who have difficulty letting go. They may have trouble acknowledging that supportive care is the best way forward and it may be delivered better at home. The use of four ethical principles2 can help clinicians dealing with all palliative care patients (see box 1).
| BOX 1: FOUR ETHICAL PRINCIPLES |
| Autonomy Respect for a patient’s choice Beneficence Doing good for the patient Non-maleficence Avoiding doing harm to the patient Justice Fair use of resources and equality of approach |
The ethical framework
Applying an ethical framework to specific cases (see box 2) can help us to see them from a number of perspectives. Below, we see how applying autonomy, beneficence, non-maleficence and justice can help clinicians to decide whether to admit to hospital three palliative care patients in different circumstances.
| BOX 2: THREE CASE STUDIES |
| Case one A patient with severe dementia, who is bedbound, very emaciated and doubly incontinent, is being cared for in a nursing home. The patient has refused food and water for several days and is clearly in the terminal stages of dying. Do you admit her to hospital for potential hydration? |
| Case two The patient is 25 years old and dying of malignant brain tumour at home. He is comfortable and pain and other symptoms are controlled with medication. The patient cannot retain any new information and is intermittently confused. He has no appetite and has eaten little for the past five days. His life expectancy is one or two weeks at most. His parents are asking for a percutaneous endoscopic gastrostomy or parenteral fluids. |
| Case three A patient with heart failure has had six admissions to hospital in the past six months, each episode lasting for one week or more. The patient is now requesting not to be admitted to hospital for a seventh time. |
Autonomy
It is difficult to apply the principle of autonomy to cases one and two because the patients, suffering from dementia and brain cancer, are unable to give informed consent.
To be able to do this, patients must be considered ‘competent’. They must be able to comprehend and understand the decision to be taken. They must be able to retain this information, consider it, weigh up the pros and cons and make a reasoned decision. If patients are unable to give informed consent, their wishes can still be respected if they made an advanced directive or living will when they were considered competent.
Advanced directives3 are becoming more common in the UK and can be useful in these situations. In an advanced directive, it is possible to set out in advance what your wishes would be in certain situations if you no longer had the capacity to give informed consent at that time. Further information on assessing lack of capacity can be found in the Mental Capacity Act .4
In case three, if the patient can give informed consent, they are expressing their choice to stay at home.
Beneficence
If the patients in cases one and two have not provided an advanced directive, we could question whether provision of fluids is doing them good or merely prolonging the act of dying.5 The fluid deficit may cause a dry mouth, but this can often be relieved by sips of fluid or local measures.6
In case three, we could be doing good from the psychological aspect by carrying out the patient’s wishes. Can we control the patient’s symptoms at home?
Non-maleficence
In cases one and two, would we be minimising harm to the patient by admission to hospital, or would we be causing more distress for the dementia or cancer patient, by changing the environment to an unfamiliar setting?
In case three, would admission to hospital be likely to cause increased psychological and physical distress to the patient, for example, if they spend several hours in A&E on a trolley?
Justice
Is there justification for the use of limited NHS resources to prolong the life of all patients who are dying by admitting them to hospital for parenteral treatment? Is it right to admit to hospital everybody who is at the end-stage of a disease process, especially when it is against their wishes?
Clearly, ethics does not always simplify the answer and can make it seem more complicated. But looking at each case in the light of these principles can aid decision-making. It is also evident that ethical principles can clash with each other and sometimes it is necessary to decide the priorities in a case.
Conclusion
These principles can help clinicians to understand, not just from the patient’s perspective, but also that of healthcare colleagues. Some cases can be very difficult and the ethical approach can be of great value. Acknowledging that patients with end-stage chronic disease are dying is the first step. To ensure appropriate care planning, it is advisable to open discussions with patients at an earlier stage, to talk about their preferences.
- Dr Simon Auty is a Macmillan GP facilitator at Manchester PCT and a GPSI in palliative care at Salford PCT
References
1. Deronzier C, Giletti J. Heart failure and palliative care. Eur J Palliat Care 2001; 8(1): 14-16.
2. Gillon R. Medical ethics: four principles plus attention to scope. BMJ 1994; 309: 184-8.
3. Ackroyd R. Advanced directives – the ethical pros and cons. Eur J Palliat Care 2003; 10(3): 116-18.
4. Department for Constitutional Affairs. Mental Capacity Act 2005.
5. Campbell C. Partridge R. Artificial nutrition and hydration: guidance in end of life care for adults . National Council for Palliative Care, May 2007.
6. Lennard-Jones JE. Giving or withholding fluid and nutrients: ethical and legal aspects. J R Coll Phys Lond 1999; 33(1): 39-45.
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