GPs need to facilitate patient choice from a range of realistic options, by offering information on what is expected to happen and what might be provided, and balance this with a rational assessment of what is possible in the timescale and given the circumstances and resources available in the area.
The answer to the question, ‘Where do I hope to be when I die?’ largely determines who will be involved in the patient’s care. It is helpful, early on, for patients and professionals to draw up a strategic care plan that might specify two phases of care. One plan might involve the patient staying at home until close to the end, then being admitted to a hospice when care becomes too demanding for the family, while another might be to admit the patient to a nursing home until near the end, when they return to their own house to die.
Advance directives and other planning
If the patient has strong views on refusing certain types of treatment, the care plan might include an advance directive. Other matters that the patient might want to address are making or changing a will, ideas for the funeral, the possibility of cremation and organ donation.
Religious traditions and personal spiritual needs may be of great importance to the patient or the family, and these may influence decisions about end of life care. If the patient is able to express preferences in advance, reasonable effort should be made to accommodate such requirements.
The need for compromise
Patients may need to compromise and agree to accept a ‘second best’ option after consideration of the consequences of pursuing their first preference. This may come about, for example, if support is insufficient because the patient has no relatives or friends nearby, or because those who would otherwise have helped are sick or disabled.
The physical environment may impose limitations, such as living in a residential care home without nursing services, or in a small house where any arrangements would seriously affect the needs of others living there. The homeless, asylum seekers and refugees have special problems. Time constraints may prevent fulfilment of the patient’s wishes, because of sudden unexpected deterioration, either in the patient’s condition or in the health of their carers.
Helping the patient to choose
It has been found that simply asking about the preferred place of death increases the chance that the wish will be met,11 but some people are understandably reticent about discussing their death. If a patient chooses not to face these questions or openly discuss them, this must be respected. Nevertheless, the opportunity should be given, because patients can only make that choice if they know their illness is likely to limit their life.
When the diagnosis of a potentially life-threatening illness is made, doctors have a duty to enlighten the patient sensitively about their health and should offer as much information as the patient seems to want, in a form that can be easily assimilated. Some patients, because of their cultural background or past experiences, may not expect to have any say in their care and only express their opinions if gently encouraged. As death approaches, people are often not in the best mental condition for making major decisions and may need sympathetic support.
The interests of those patients (many of them elderly) who are unable to make decisions concerning their own healthcare are protected by the Mental Capacity Act (see Box 2).
If somebody seems unable to make a decision (that is, they lack the capacity), an attempt should first be made to maximise their ability. Decision-making capacity may fluctuate and is specific to each decision. For example, a person may be able to consent to admission to hospital in a crisis, but unable to express a wish about future care. There is provision for mental capacity advocates to assist people whose capacity is reduced. In the final analysis, a patient’s best interests may need to be determined by somebody holding a lasting power of attorney, or by the courts.14 A patient may have made a decision, such as to refuse certain treatments, at an earlier stage when they had the capacity to do so, and this would take effect when the capacity for consent to treatment no longer exists. Any such advance decisions should be taken seriously.
Plans made at an early stage will reduce the risk of difficult decisions being made later, in haste. The process of palliative care should begin early in the illness, not just when the patient is close to death,15 but it is important to recognise when the dying phase begins. The onset of this phase may be abrupt in some cancer cases, perhaps due to catastrophic haemorrhage. Sometimes, in conditions such as cardiac failure that fluctuate over time, it may be more difficult to discern the right moment to change from attempts at curative treatment to easing the final days or hours of life.16