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Hospice - the focal point of palliative care.

The word hospice is derived from the Latin word hospitium which means hospitality. It was first used in the middle ages to describe places built along the route to the Holy Land to provide rest and care to the pilgrims. These places were known as hospices (travelers houses of rest, places of refuge).

Today the hospice is much more than a building. It is the concept of care extending to the home, hospital and hospice.

The word palliative is derived from the Latin word pallium - a cloak or cover. Thus in palliative care, troublesome and distressing symptoms are cloaked "with treatment whose primary or sole aim is possible patient comfort."

The main goals of hospice care are to provide -

• Relief for patients from pain and other distressing symptoms. Always remember pain is what the patient says it is not what we think it should be.
• Psychological and spiritual care for patients so that they may come to terms with and prepare for their own death as fully as they can.
• A support system to help the patients live as actively and creatively as possible until death, thereby promoting autonomy, personal integrity and self-esteem.
• A support system to help families cope during the patient's illness and in bereavement.
• These are conveyed by attitudes and actions e.g.
  - Taking time to explain what is happening
  - Giving the patient a direction in which to move by settling priorities and establishing realistic goals
  - Improving the relief of pain and other troublesome symptoms
  - Establishing trust between the clinical staff and the patient and family
  

Coast Hospice Cancer Care - Palliative Care

Management of Illness

There are three main categories:

1. Treatment may be rational when the cause of disease is known and a specific drug with proven capacity is directed against it, e.g. an antibiotic for bacterial infections.
2. Empirical, when the effectiveness of the treatment has been demonstrated in practice, though the true nature of the disease or the mode of action of the drug is not revealed, e.g. a painkiller for a headache.
3. Palliative, when the treatment does nothing to alter the cause of the disease but relieves the patient's symptoms, e.g. morphine for excruciating pain suffered by cancer patients in the terminal stages. Palliative care is for those who are terminally ill regardless of the illness. It could be cancer or AIDS or Parkinson's disease and many others. This list can go on. Naturally, the resources of health care practitioners and services are focused on those that are most widely spread. It is truism that cancer and AIDS - not necessarily in that order - are the commonest terminally ill diseases today. Hence, the plethora of individuals and organizations that makes it their business to deal with the management of those who are terminally ill.

Definition of Palliative Care

Palliative care is the active total care of patients whose disease no longer responds to curative treatment. Control of pain, of other symptoms, and of psychological, social and special problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families.

There is also palliative medicine and palliative surgery. For example, a terminally ill cancer patient may have an intestinal obstruction that makes life more miserable when it is already miserable. Simple surgical intervention will clear the obstruction and give much relief to the patient - it will add quality to her life - without curing the underlying disease.

Palliative Care:

• Affirms life and regards dying as a normal process
• Neither hastens nor postpones death
• Provides relief from pain and other symptoms
• Integrates the psychological and spiritual aspects of patient care
• Offers a support system to help patients live as actively as possible until death
• Offers a support system to help the family cope during the patient's illness and in its own bereavement.

World Health Organization (WHO) definition of Palliative Care 1990

The Aim of Palliative Care

Is to have people with terminal illness have quality life and die in peace and dignity. The patients agenda should be central in the planning process of the care of the patient, whose wishes should be respected as much as possible. Planning with the patient at an early stage is necessary.

People Involved in Palliative Care

• Patient
• Professional health workers
• Family members
• Friends and other care givers
• Community volunteers e.g. community health workers
• Those involved in the spiritual care of the patient, either church, mosque or temple leaders.

Home Care

Many years of experimentation and experience have proved that whenever possible, home care is best.

• It is cost effective.
• The familiarity helps the patients psychologically and in other ways immensely.
• It is easily accessible to family members, friends and others involved in palliative care.

However, under special circumstances where home conditions are not conducive for care, institutional care may be necessary. Palliative workers should do their best to ensure that even home conditions can be changed to an extent that institutional care is rendered unnecessary.

After the Diagnosis of Terminal Illness, What Next?

After every conceivable medical intervention that is available fails to cure and the patient is pronounced to be terminally ill, there is a devastating psychological effect on the patient, the family and those close to the individual.

The medical profession has two options;

• To say to the patient " …you are terminally ill, our diagnosis is accurate and the advent is certain and not too far distant. And regrettably there is nothing we can do for you."
• Or to say the same without adding " …there is nothing we can do for you."

There is a lot that can be done for the patient. Someone who is terminally ill may live longer than an individual who appears to be very fit but may drop dead the next day as a result of a massive heart attack. Palliative care can do a great deal to add quality to that individual's life to prepare him and his family for the inevitable. However during that period to ensure that life has optimal quality and that when death comes it is a dignified process.

Treatment changes from the curative to the palliative and supportive. Palliative care developed as a reaction to the attitude, spoken or unspoken, that "… there is nothing more we can do for you". Medical practitioners feel completely powerless. However the secret is not to be afraid of it - not to run away. The dying know that the medical practitioners are not God and all the dying ask for is that we do not desert them. Given the psychology of the dying patient there is an immense amount of supportive work that can be done to help a patient to a holistic palliative care approach.

This information is an extract from an article titled Palliative Care - An Introduction and an Overview by Dr. Nizar Verjee, the Chairman of Nairobi Hospice.

For more information on palliative care and hospices please check out the following links to websites we recommend.

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