Ways to improve care of the dying in hospital

The following adapted paper from Sweden is the winner of the £50 Natural Death Centre Award for the best essay from a doctor on how to improve care of the dying in hospitals.

Many people die in institutions. It does not seem likely that society can offer dying at home to all patients, but dying can be de-institutionalised and restored to families by inviting relatives, friends, pets and special belongings into the hospital.

For those without relatives or friends hospital staff must act as surrogate family.

A young person's death shakes our illusion that 'we die when we're old'. An old person's death may seem to confirm that illusion, but we may be overlooking his or her feeling of not being ready to go. Like birth, death must be regarded as something special, however often seen. Professional caregivers must not be too professional.

In my ward in Malmö, in Sweden, we try to overcome this danger by having an all-staff meeting every morning, where we talk about the patients, especially those who have died during the night or the day before. We trace back our memories of the ones who have died from the day they came to our ward, remembering the problems and successes in symptom control and in communicating with the relatives. It is a sort of celebration, counteracting the 'next please' tendency.

During the last decades great changes have taken place in care for the dying. We know more about, and have better resources for, symptom control and invasive techniques to enhance quality of life. From this stems my firm belief that palliative care must be based on medical knowledge of symptom control. Just as important, however, is a change of atttitude towards patients in general and to death.

Today the patient's own rights are supported as is his responsibility for himself. It is not a question of if the patient is to be told about his cancer or not, rather of how and when.

If death is not regarded as a medical embarassment, it is important for it not to be hidden and denied. It is an enormous relief to be able to talk openly without evasion or lies - for the patient as well as for those around him. Death must be seen not only as the end of a terminal disease but as the end of a life. In the terminal phase there is a change from being a cancer patient to being recognised as a person whose cancer is one of the problems in the dying process. This must be acknowledged in the care given, even in a hospital. To follow a person towards death one must know him a bit and be as close as he permits.

For the last five years I have been running a ward for terminal care with 16 beds, in two double rooms and twelve single rooms, four of which have an extra bed for visitors staying overnight or resting during the day. The staff/patient ratio is 1.07 to 1 which provides opportunities for spending more time with patients and relatives than is usually possible in hospitals. All members of staff have regular training. To learn how to follow the patient's wishes instead of leading is a difficult thing for all of us. Too often the patient's interests in music, literature and religion are not catered for, because they are outside the staff's frame of reference. Details may be crucial in medical care, through listening, talking and paying attention to body language.

When I am visited, mostly at the General Hospital, by patients before admittance to this ward, I ask each one the following questions:

(1) What are your most pressing problems?

(2) What do you want from the care provided in Ward 2?

(3) What is your outlook on the future?

(4) From where do you get your strength?

(5) How do you feel about coming into the palliative care ward?

These questions work as discussion openers. Some patients ask me 'Why has nobody asked me these things before?' Yes, why indeed!

On arrival at the ward they are received by the nurse in charge who sits down to talk to the patient and the accompanying relatives (after showing them around). They are informed about facilities, meals and activities that can be chosen as the patient's abilities allow; they are reassured that visitors are permitted at any time, with overnight stays when needed, etc. The patient's wishes, not the ward's routine, are sovereign. I make a point of welcoming the patients to the ward and of showing more interest in them than in their disease. The patients are encouraged to talk about themselves, their dreams, successes and failures, hopes and fears.

Relatives are always invited to talk to the doctor a short time after admittance. They are not only kept informed but can talk about anything: earlier deaths in the family, strained relationships or valuable information about the patient's needs and interests.

Where is the right place to die? Ideally everyone should be able to choose. Due to the unpredictability of death as well as to money factors, this is not possible, so we have to enhance the quality of care at all locations. For those with a short terminal phase, or who are expected to die imminently, there should at least be good symptom control and some privacy, with the relatives being taken care of and the patient not left alone. These seemingly basic aspects can be hard to guarantee in a hospital, but with training and a change of attitude, it could be possible to provide, even in a rushed acute ward, a still 'island' for the dying. I believe there is much to be gained from having separate places for the dying who are not cared for at home - places where they can let go of futile hopes of a cure and spend all their energy and hope on living day to day in their own way, with the best possible symptom control and care.

If a special ward for palliative care is situated in the hospital there is the advantage of shorter trips for palliative treatments and tests. But besides symptom control, the aim of this palliative care is to help the patient reach a state of reconciliation to life and death. For relatives the last time they see the dying person will affect their memory of the dead one. So I can readily envisage another setting for dying patients:

In my vision there is a big house with easy access to the garden, shaded by old trees; spacious rooms for wheel chairs and moving beds around; and large windows for light and for views of the changing sky. Why are patients taken out only on hot summer nights - why not on a starry night? There is a fireplace with wood burning for scent and warmth, with stories or books read to patients gathered by the fire. Music is important, live or recorded, but not a radio blaring away all day. Books and picturebooks are available, and relatives bring patients' photo albums for reliving better times and maybe share them with the staff. Food is attractively served without hurry. Pets are welcome. Birds in cages stay next to some patients' beds. A friendly dog is living in and purring cats are on the laps of willing patients. Spiritual values are taken care of. With flowers, trees, light, music, literature, fire, beauty in furniture, textiles and colours, I aim for a stillness, a contact with things eternal. Death would be regarded as part of life and not a clinical matter.

Today we face even more limited budgets. Not all patients would feel at home in my vision. There are those with few interests, bad relationships and severe symptoms. What is a good death? No one knows, but dying is the part we may be able to improve.

Better symptom control by adequate symptom analysis and treatment would make a change. Medical efforts that prolong life without added quality of life for the patient must be avoided. Paying more attention to the individual than the disease and making relatives feel welcome and useful doesn't cost much. Training of staff, including doctors, can make changes even when the buildings are less than perfect. What the patients on my ward seem to value is the feeling of calm, the availabliity of staff and doctors and the feeling of being 'seen'. Nobody is left to die alone, relatives are allowed to stay with the dead as long as they want. They get coffee and someone sits talking with them. No one is rushed away with a plastic bag of belongings. Three weeks after the death, the closest relative or friend gets an invitation to talk with a doctor or nurse.

While this is being written people are dying in Somalia, Yugoslavia and other places in terrible circumstances. There is a risk in comparing them with those dying in our hospitals, but one evil doesn't justify us not trying to improve what we can about another. In the care of the dying in hospitals in our part of the world there are feasible improvements that can make a difference to patients, relatives and carers.

Dr Marie Louise Grennert, Kliniken För Geriatrik Och Rehabilitering i Malmö, Östra Farmvägen 1, 212 16 Malmö, Sweden, (tel 040 33 10 00; fax 040 33 57 03).