Terminal Care

See related article Helping Patients Face Death and Dying.

This article will aim to examine the terminal stage of palliative care, as other articles cover symptom control in palliative care.

Given the option, most people would choose to die at home surrounded by those whom they love.^1,2 The latter may require support and resources to help them to cope.³ This can be a significant burden upon the Primary Healthcare Team in terms of time and emotion but it can also be most rewarding.

Terminal care is not just cancer care but other relevant diseases include heart failure, respiratory failure, chronic renal failure, hepatic failure, certain neurological diseases such as multiple sclerosis and motor neurone disease and AIDS. Each may bring its own challenges in terms of the provision of terminal care. A study of end-stage COPD patients for example found that such patients tend not to actively ask for help and a discussion about support may need to be initiated by the healthcare worker.⁴

The Gold Standards Framework is supported by many authoritative bodies and represents a standard of excellence to which we should aspire.⁵ They summarize as their key tasks the 7 Cs:

• Communication
• Co-ordination
• Control of symptoms
• Continuity including out of hours
• Continued learning
• Carer support
• Care in the dying phase

One of the key factors in managing terminal care is to institute such care at an appropriate time. This involves an estimation of prognosis. The Gold Standards Framework has developed a Prognostic Indicator Guide to assist in this process.⁵

For the patient wishing to die at home there must be adequate backup. This usually means a close person such as a spouse, long-term partner, close relative or a team who are available 24 hours a day. Night sitter services are available but costly. The carer must be prepared to cope with both the emotional and physical needs of the patient and these can both be very demanding.

Care of the dying patient at home requires a team approach involving the GP, district nurses, perhaps Macmillan nurses and any other professionals with input. This may include Social Services. Very often a minister of religion will be visiting too. There should be a key worker who is the main point of contact for the patient, the family and the rest of the team. The key worker is often not the most senior member of the team but is the important person who liaises and who ascertains that nothing is left undone or duplicated.

If there is likely to be any problem out-of-hours the local provider of unscheduled care should be informed. They should have a list of all terminal patients. Adequate liaison may prevent unnecessary visits including, if the family agree, waiting until the morning to certify death.

Death will come to us all but when it becomes imminent, emotions are bound to be strong.

Fear is common. How long will it be? What will it be like? Try to be honest with the patient and answer questions to the best of your ability, including being honest about uncertainties. Most people do want straight answers but you need the greatest intuition to know just how much the patient really wants to know and how much he really wants hidden.

Many people faced with death will turn to God either for the first time or as a return to lost faith. Put them in contact with a minister of religion if required but do not attempt to influence an area that is not in your sphere.

They may also wish to make peace to end feuds with relatives or friends.

If a will has not been made, then even at this late stage it should be done as dying intestate almost invariably causes complications.

As death approaches the patient will become weaker. He will need help in and out of bed and to the toilet. Sleep may be excessive. Appetite usually diminishes and weight falls. Be prudent in deciding if intensive nourishment is in the interest of the patient. Food dense in calories is often poorly absorbed and may produce diarrhoea and the distress of faecal incontinence.

Urinary incontinence is often followed by faecal incontinence. This is distressing for the patient, unpleasant for the carer and adds to the burden of laundry. Pads, waterproof under-sheets, etc. are useful. As well as the unpleasantness, incontinence is a danger to the integrity of skin and in this condition if it breaks down it may never heal again. A urinary catheter may be required but do not be too eager and discuss the options with all parties first.

Immobility, poor circulation and inadequate nutrition all predispose to pressure ulcers . Frequent turning, sheep skins and ripple mattresses are all to be considered. Turning can sometimes be very painful but necessary.

Pain is what patients fear most although in reality other features such as dyspnoea may be more distressing. There is a very wide range of other problems that will be encountered and most patients will suffer a number of them. A large study gave those problems and their frequency as follows:⁶

• Insomnia (59%)
• Anorexia (48%)
• Constipation (33%)
• Sweating (28%)
• Nausea (27%)
• Dyspnoea (24%)
• Dysphagia (20%)
• Neuropsychiatric symptoms (20%)
• Vomiting (20%)
• Urinary symptoms (14%)
• Dyspepsia (11%)
• Paresis (10%)
• Diarrhoea (6%)
• Pruritus (6%)
• Dermatological symptoms (3%)

The hospice movement has done much to further knowledge about the management of pain and distress in terminal care. The doctor should be confident in his ability to manage pain and this should be transmitted to both patient and carers.

• Keep to oral medication for as long as possible.
• Try to avoid injections.
• Patches for drugs such as fentanyl are expensive but useful. Syringe drivers can be valuable.
• Let others, including patient or carers, decide to increase the dose if required but keep a general overview to insure that a rational regime is in place.
• If doses are too far apart the pain becomes severe and debilitating and requires a very high dose to suppress it. Hence the patient spends half the time distressed by uncontrolled pain and the other half sedated by heavy medication.
• In the terminal stages decide what routine drugs can be stopped.
• The central anxiolytic action of the opiates is very important and drugs including benzodiazepines, tricyclic antidepressants and phenothiazines can enhance the effect. Despite their effect of suppressing the respiratory drive they can also be valuable in alleviating some of the distress of dyspnoea of respiratory or cardiac failure but they should be used with care.

The following table may be a useful guide when a drug, dose or route of administration needs to be changed:

In addition, a table of relative potency of different drugs may be useful.⁷ SIGN has also produced guidelines for the control of pain in cancer.⁸

Since the trial of Harold Shipman many doctors have become very wary about the use of opiates and other drugs in terminal care. If patients suffer as a result this is most regrettable. Palliative care may require sedation for symptoms other than pain, such as involuntary movements.⁹ Sedation is frequently required.¹⁰

The ethical issues surrounding decisions about palliative sedation and the role of food and fluid intake in the prolongation of life are extremely complex. A systematic review has found inconsistencies in approach and calls for multicentre, prospective, longitudinal and international studies to help inform the process.¹¹

Our job is to prolong life, not to prolong death and whilst it may be argued that adequate sedation may slightly shorten the terminal phase, this is not the same as euthanasia. Furthermore, it should not be assumed that adequate relief of pain will necessarily hasten death.¹² Sometimes patients or relatives may plead for the health professional to end a tragic last phase.¹³ Repeated requests are difficult to deal with. One study found that the response was variable and called for healthcare professionals to share the experience of troubling cases and of moral conflict and to be supported and heard in a non-judgemental environment.¹⁴

As death approaches, the amount of time spent drowsy or comatose increases, the lucid time decreases and increases in medication are usual with increased dose and frequency.¹⁵ This is usual and the clinician should not be unduly concerned or surprised when it happens.

Before the terminal stage and particularly whilst the patient is of sound mind, unimpaired by drugs, he may wish to consider terminal care and how he wants it to be managed. Advance directives, also called living wills, are the vehicle for this. A conventional will should also be in place.

Caring for a loved one who is dying is a very demanding time. The emotional turmoil, compounded perhaps by lack of sleep must take its toll. Seeing one's parent, sibling or spouse slipping from a strong and independent person to be frail, dependent, incontinent and perhaps at times confused shadow of his former self is most distressing and can produce feelings of anger or guilt.¹⁶ Perhaps the husband looking after his dying wife is having difficulty coping with the double incontinence or the frail woman is struggling with heavy lifting.

Carers, like the patient, need to know what to expect. The "death rattle" of terminal breathing or Cheynes-Stokes breathing they may find most distressing.

All attention is on the dying patient. Do not forget the needs of those who care.

Remember practical details too like who to call in case of need and what to do when death occurs. They must not, in ignorance, dial 999.

Have they spoken to the patient about practical details including funeral arrangements and where the will is lodged? When you certify the death speak to the carers to let them know that you care about them too. Arrange to see them in the surgery some time after the funeral or to see their own doctor if they are not your patient. Usually it is a busy time until the funeral and it is after everyone has left that the emptiness appears.

Whilst their needs can be challenging, carers should also be seen in a positive light as an ally and a resource. They are often the best person to assist the health professional in making decisions about the care of the dying patient.¹⁷ A systematic review suggests that more work should be done in teaching carers practical skills such as basic nursing care.¹⁸

When an old person dies it is often an emotional time although one can rationalise a degree of satisfaction at the end of "a good innings". When a young adult, an adolescent or child dies emotions are compounded and you need also to be aware of the emotional needs of all around.¹⁹ This includes your professional team and yourself. All the above applies as much to the young as to the old but the curtailment of a life of promise is emotionally much more traumatic. One study suggested that there was still a lack of routine contact from the health care team with the family following the death of a child.²⁰

Care at the beginning of life has been removed from the hands of most general practitioners but we can still discharge ourselves with credit at the end. Care of the dying at home is very time-consuming, difficult and demanding but there is much professional satisfaction. The After Dying Assessment Tool developed as part of the Gold Standards Framework can be used to monitor
areas requiring improvement and benchmark for successful quality improvement.⁵

Your surviving patients will judge you on how you managed the entire episode. It is the ultimate in holistic care. Show competence and compassion.

Death is not a failure of modern medicine but as inevitable as ever it was. "And one day, I too shall face death and not as a stranger."²¹