This article appears in the May 1998 edition of the Catholic Medical Quarterly
The Costs and Benefits of Hospice Care
Abridged from a talk delivered at Compassionate Care for the Dying Conference
What is available to people as an alternative to having their lives shortened in the face of terminal illness? What is palliative care? What is hospice care and what are its limitations?
The Hospice is primarily a concept of care and not a building. In medieval times, hospices were for the care of sick or wounded pilgrims; but in its present sense of caring for the terminally ill, the hospice was adopted for its connotation of people on a journey. It has now given rise to the tern palliative care which comes from the Latin, pallium, a cloak, a cloaking of the symptoms of a disease which we cannot control.
Pilgrims on their journeying were looked after by the early hospices; people at the end of their lives are also on a journey.
Persons should be able to live, until they die, at their own maximum potential according to the limit of their physical and mental capacity, with control and independence wherever possible. That is what palliative care is about.
The Hospice consists of a specialist in-patient unit with three types of care available to those who come to them: 1) Care for people who are actually dying at the moment. 2) Admission of those with difficult symptoms in order to alleviate them so that they are able to go home again and live more comfortably. 3) Small provision of respite care to give carers and families a break from looking after the patient at home.
The proportion of people who leave hospices is increasing. Hospices have the image of being places with a one way ticket; you come there and never leave except in your coffin. St. Christopher's, the largest of British hospices, has 62 beds: through them come 1200 admissions every year. Of those, 40% and more will return home because they have been admitted for symptom control; many people come in several times during the course of their terminal illness. The average length of stay is approximately a fortnight.
In addition to in-patient units, and very importantly, there are home care services: specialised services to assist people at home or in nursing homes, consisting of groups of specialised nurses who have under- gone further training in palliative care techniques. They bring the skills of palliative care to the patients in their own homes and work in conjunction with the community services, general practitioners and district nurses.
Some of these home nurses are known as Macmillan nurses who are trained to deal with cancer patients. Others are the Marie Curie nurses offering the service of night sitting with patients. There are also home respite teams, a more recent innovation, consisting of specialist respite care nurses who work not only during the night but, if required, during the day to supplement the district nurses. They are provided by the hospice.
In addition there are hospice day centres which provide opportunities for patients to spend time out of the home in a therapeutic environment and offer facilities for socialising and learning new skills. They may attend for one day each week, but each day offers a different programme.
We, for example, organise a young nursing day, young for us, for patients under 50, with, among other things, a group where people discuss what it is to have cancer or motor neurone disease. Not subjects which would appeal to everyone, but those who are prepared to discuss them would not like to play whist. A great variety of imaginative things have to be provided at these sessions. Day care services are a rapidly growing part of palliative care provision.
At the bottom of the list, but not least, is the introduction into hospitals of the hospital specialist advisory services working alongside hospital doctors while the patient is with them. The concept, pioneered at St. Thomas' Hospital, London, is now widely spread throughout the country.
The hospice world has grown from 17 in-patient units and 1 home care team in 1969, the latter being ours down in Sydenham, to 228 hospices in 1998. The rate of growth of hospital in-patient units has slowed recently, as people when they approach death do not want to be in any sort of institution but rather in their own homes. Home care teams have therefore multiplied enormously, together with other groups helping people to be at home.
What about cost? Overall, the NHS funds approximately 40% of palliative care costs.
Most hospices are not funded by the NHS and charitably. There are some entirely NHS hospices but the majority are independent. Both the Macmillan fund and Marie Curie are sources of income; but viewing the hospices as charities, the total expenditure of the largest hospices is well over 100 million pounds a year. Grouped as one charity, the hospice movement is the largest charity in the UK, apart from Oxfam; well ahead of the Lifeboat, well ahead of Barnardos, and well ahead of Cancer relief. The amount of money the British people pay out of their taxed income to provide their community with palliative care is absolutely extraordinary.
It is essentially a community initiative. Most hospices were founded by local groups of enthusiasts: their continuation is not entirely but to a very large degree dependent on local contributions. If the people of Britain decided that hospices were not a good idea, the whole movement would fall flat within about a year or so, dependent on the extent of the reserves.
Who gets palliative care? The original inspiration was towards cancer following Dame Cecily Saunders meeting a Polish refugee called David Tasna and being struck by his needs, both physical and emotional, due to the intense loneliness in the face of being isolated from his own country and the illness he faced. Hospices now increase the range of diseases for which they care. Motor Neurone disease has long been under the palliative care umbrella, AIDS is catered for. St. Christopher's looks after a number of other neurological conditions, cardiac failure, renal failure and terminal respiratory disease.
Overall, the units care for 15 % of people who die of cancer, with the remainder dying at home. In our area, the Home Care Teams look after at least 40% of those with cancer, and St. Christopher's looks after 60%.
Terminal people have needs which are complex. They don't just need a doctor and they don't just require a nurse. They require the services of a complete multi-professional team. Palliative care is not a matter for the individualist: it is a playing of an orchestra. At different times different people are needed to provide the help. With the best will in the world no one professional can actually do it all. I am certainly an enormous beneficiary from working with colleagues in other disciplines.
Does it do any good? At bottom, palliative care is extremely good value for the NHS. A study from Hall and Ultman, two sociologists, and part of a larger study, looked at over 2,000, dying people spread over a wide swath of the country. It looked at those who died in hospital and those who died in a hospice. By the perceptions of those who are left, pain control was better in the hospice group, and the perceived excellence of doctor care and nursing care was also significantly greater in the hospice. This is not meant to he a downer on the hospital personnel; it is simply that there is some evidence that a specialist focus on looking after people may bring greater advantages. Indeed Colin Murray Parkes, a psychiatrist with long experience of bereavement care, found that, at St. Christopher's, pain control was no better than at the local hospital, for they had improved theirs over the years. But he found the management of anxiety was better in the hospice.
What about in the community? A report from the academic department of general practice, in the university of Exeter, found that the combination of a general practitioner with a specialist palliative nurse provided greater symptom control than the GP working alone. The addition of a district nurse and social worker improved the card further.
Pain remains the most feared symptom at the end of life and is one of the commonest symptoms of cancer. Its incidence rises from about 30% earlier in the diagnosis to about 70% by the time people have advanced disease. Generally, the cancer is the direct cause of the pain. It is a chronic pain going on day after day, week after week, month after month: it never gets better. It is often associated with other symptoms, breathlessness, nausea, loss of appetite and weight loss.
Pain, like other symptoms, has major social, emotional and spiritual consequences. For instance there is the concept of 'total pain' used by Cecily Saunders, and inspired by a patient who, on being asked where the pain was, replied 'It's all pain really'. What she meant was that she preferred to have a real physical ache somewhere; but here was the emotional pain of leaving her family, losing her own good appearance as she lost weight, looking so haggard that she did not present so well to the world any more, until her morale became negligible. The spiritual issue also, whether it is couched in religious terms or not, is nonetheless vitally important. 'Why me?' 'What's the meaning in all this?' 'Why should it happen to this person, to my family?' 'Why should they lose their mother, grandmother, or whoever it is? 'Anxiety makes worse any symptom the patient may have. The pain of cancer requires treatment on a broad front: that is why we need a multi-professional team.
Medication is usually given by mouth, the reason being that people should remain independent for as long as possible. Until now they have been slowed by their chronic pain; and do not want to be slowed further by professional input. With needles and lines around you, requiring frequent professional visits, you are not free.
Fears and lack of information need to be dealt with, as so many people are unclear what the illness means for them, where is it going to lead: are they going to die in agony? There may not have been time to go through this in the oncology department, or they may not have thought about it or may not have wanted to.
The open questions, 'What is it that is worst about all this?' 'What is it that is troubling you?' are important, as one never knows what may pop out.
It may be that the fears, although they are part of the experience of the pain, are contributing to how bad the pain is and may be more important than any physical sensation that the person is experiencing. People must feel they have ongoing support; they must not frantically worry that they may be left out in the cold. One cannot promise a complete result, but one can promise never to give up trying. That is important to people.
A main guideline is the WHO analgesic stepladder
It recognises different categories of painkillers: simple pain killers, non opioids not related to the poppy; weak opioids like codeine; and strong opioids, principally morphine. Each category has many members but there is no point in moving from member to member. WHO recommends a stepladder approach from category to category.
The new patient should be given a simple analgesic, perhaps paracetamol. If it is not effective, change to the next category, to codeine. If that is not successful, do not offer another variant of codeine but change to one of the strong opioids like morphine. There is much anxiety regarding the use of morphine; but it is needed when nothing else controls the pain. This must be recognised as an indication, not how ill the patient is, but rather how the other remedies have not been successful.
The WHO ladder has been tested around the world: the results indicate that 85% of cancer pain can be controlled with this simple use of drugs.
Pain control can be further improved by using other specific medications, or other techniques, such as radiotherapy, blocking the pain of cancer in bones, or specialised nerve block. With these further aids 95% of cancer pain can be fully controlled. Even when full control is not achieved, there is always something that can be done. If the pain is related to movement, adjust the patient's life style so that they do not have to move so much or very occasionally at the expense of sedation.
The use of morphine still seems to worry a lot of people: its use has been involved in the euthanasia debate, as a means of killing people by giving an extra dose or having to give so much to control the pain that the patient dies. It is a remarkable drug in that individuals get the same response from very different doses, and the dose for a particular person is not known. Initially a small dose is indicated, and it is administered regularly; its frequency depends on the preparation and the user. The basic preparations are administered four hourly, but there are slow release preparations which last for 12 hours or even 24 hours. Titrate upwards; increase the dose gradually until the pain is just controlled. Usually, 4 hourly preparations are used until the dose is stable and then changed to a slow release preparation.
The general rule is, not too much to cause sedation nor too little to prevent the pain breaking through.
Causes premature death, because it stops respiration. This can happen if the patient who does not have pain is given a large dose. Pain is the natural antidote to respiratory depression which is rarely seen when morphine is used appropriately for pain control.
If anything it tends to lengthen life, because by controlling pain it allows people to be more mobile, and thus less likely to get infections, especially pneumonia.
There is also a myth that it loses its effect if used too early and, therefore, should always be kept in reserve. This is rubbish. Provided the pain is sensitive to the drug, it can be used successfully for years and years. Many patients do not survive long enough to experience this benefit, but some have, and are well attested and written up.
What about addiction? It is not an issue here. Addiction is the need to get constantly another fix of morphine in order to get a high from the drug. It does not happen when the drug is being used for pain. There is a steep initial rise in the dose, but, when it is titrated against the pain, the dose stabilises at a fairly average level for the rest of the patient's life, unless something happens in the nature of the illness to cause extra pain.
Does morphine stupefy the patient? Many worry that, if they are started on it, they are going to turn into a zombie. This is not the case provided the dose is titrated against the pain. Too much may cause drowsiness: then it should be reduced as with any other drug. There is no reason to cause stupefaction.
What about the principle of double effect which we hear so much about nowadays in the media? The debate is that high doses of morphine are given, resulting in the premature death of the patient. But the essential aspect of double effect is that of intention. What is intended? Not the death of the patient; the intention is to relieve the pain.
Unfortunately as a foreseeable by product, the patient may nevertheless die.
It is an important ethical distinction, but not one that arises from medicine.
Double effect can hardly ever be invoked in terms of pain control. Some doctors assert that they have killed or had to kill a number of patients over the years, simply to achieve pain control. This makes one question their competence in pain control management. It is simply not necessary to kill patients in this situation.
From 1,200 admissions annually at St. Christopher's, I struggle to remember a patient whose life was even arguably shortened by pain relief.
Is morphine, on the other hand, the great wonder drug? It is not perfect; it constipates and about 1 in 3 people feel nausea and need to be warned about this possibility. Some pains are not fully responsive.
Difficult examples, out of the 5% of patients in whom pain relief becomes complicated, are nerve damage pain, the pain of cancer with bone involvement, and movement related pain.
Nerve damage pain is extremely complicated. It is where a tumour has eroded into a nerve; but it can also follow trauma or even infection. Morphine may work but quite often doesn't. Alternative drugs are anti-depressants or anti- epileptics. Independently of whether depression is present, anti-depressants may help nerve damage pain. Presumably they act on the nervous system, and nerves are involved in the mediation of pain. Similarly, anti- convulsants, which control the electrical activity in the brain, may help.
There is also a whole host of other drugs which can be used to control nerve damage pain.
For bone pain one can use drugs like ibuprofen, used for arthritis, which is often more effective than morphine. But the most important technique of all for this condition is radiotherapy; one single shot of radiotherapy will sort out over 80% of cases. Painless and requiring only 25 min. in the department, it is by far the best treatment for bone pain.
Movement related pain may arise as a result of bone weakening from cancer. The problem here is that, if sufficient pain killer is given to cover the peaks of pain when the person moves, for the rest of the time, when not moving, the patient would not have pain anyway. They may, therefore, be getting an overdose and are likely to become very sleepy. In this situation a nerve block may be useful.
Difficult situations in the terminal state
Intestinal obstruction which cannot be relieved by surgery.
The traditional answer is to drip and suck. But the long term effectiveness of this is extremely poor, it tethers the patient to the spot and makes them feel an invalid. It also means they have to be in hospital. One of the major advances in palliative care, in recent years, is the medical management of this condition. The use of a syringe driver with a needle under the skin, not in a vein, together with a combination of pain killers, anti-emetics, and drugs to ease out collage in the bowel, has achieved pain relief superior to the drip and suck method. It enables the patient to be entirely free to move, since the machine can be put in the pocket or over the shoulder. Hospitalisation is not required; the patient is up and about and can go on excursions. Some vomiting may occur, often once a day, but they can still eat and drink and absorb enough fluid both for nourishment and the avoidance of dehydration.
Antibiotics and diuretics are often helpful, but quite often morphine is used, for it is known that at a low dose it can off set breathlessness. Diazepam is also useful, for it relaxes the respiratory muscles and calms some of the fears which breathlessness inevitably arouses, thus allowing the patient to exercise more and generally feel a great deal better. Better results are achieved than simply putting on an oxygen mask. It has been shown that O2 is no better than air in helping breathlessness. Most people with this condition have already high O2 levels. They need something to help them breathe in a more relaxed way: physiotherapy allied to drug management is a better way of doing it.
Finally, permanent restlessness
One of the most distressing things for relatives of the dying is to witness the end of their life as unrestful. For most people it's a peaceful time in any event but a quarter may experience marked restlessness. This is not due to a great upsurge of pain which, if anything, becomes easier to control at this stage. It probably results from the way the body is ceasing to have its own internal control mechanisms. Here sedation is required. But does this bring peoples lives to an end? A study completed at the Royal London Hospital and St. Joseph's Hospice in Hackney found that sedation was required for only a day and a half on average; and the life expectancy from the time the patient came into the hospital or hospice was no different whether or not the patient required sedation. In other words, it is not the sedation properly used which is bringing people's lives to an end. Sedation is a reflection of how ill the person now is. It is not true that patients are sedated until they die. Sedation until death is bad medical care.
Dr. Nigel Sykes is Head of Medicine, St. Christopher's Hospice, Sydenham, Kent.