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Palliative Care

Introduction

Home-based care community members receive training certificates Palliative care is defined by the World Health Organization (WHO) as “...an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems”. 1

According to the Oxford Handbook of Palliative Care, palliative care is generally underpinned by the following principles: 2

  • A focus on quality of life, including good symptom control
  • A whole person approach, taking into account the person's past and current situation
  • Care that focuses on both the person with the illness and those that matter to the person
  • A respect for patient autonomy and choice
  • An emphasis on open and sensitive communication

Different definitions of palliative care

There are four main ways in which definitions of palliative care may differ.

  1. Palliative care is sometimes defined as solely being care that alleviates pain and other symptoms. With these definitions palliative care does not include any other support for either the patient or their family.
  2. In the 1960s hospices provided palliative care for people who were dying of cancer. As a result palliative care was defined as being care that was provided for people who were not receiving any treatment to actively treat their disease. It has since been realised that many aspects of palliative care are applicable earlier in the course of a disease and that palliative care can, and often should, be provided alongside disease modifying treatment. Some definitions of palliative care such as the one given above, either implicitly or explicitly allow for this.
  3. Palliative care is still sometimes defined as solely being for people with cancer, but palliative care is more often now defined as being for people facing a life-threatening illness. Palliative care is not usually defined as being for people with chronic conditions such as diabetes.
  4. When palliative care first began to be provided for people with AIDS in the 1980s, it was realised that the provision of palliative care for a “family” could exclude the person who mattered most to a person with AIDS. Some definitions of palliative care now try to ensure that the word “family” is interpreted as including everyone who matters most whether a “blood” relative or not.

What is supportive care?

Supportive care is another term that, like palliative care, has a number of different definitions.

If palliative care is defined as being only about pain and other symptom control, then supportive care may include palliative care as well as a range of other care that could be provided to support a person (and their family) with a life-threatening disease.

Supportive care usually refers to the care that is provided to a patient and their family from pre-diagnosis, to treatment, to death, and into bereavement.

What is end of life care?

End of life care is an important part of palliative care, and usually refers to the care of a person living with a progressive condition during the last part of their life, from the point at which it has become clear that the person is in a progressive state of decline.

“You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.”

Dame Cicely Saunders

End of life care is usually a longer period than the time during which someone is considered to be "dying". In the UK it is mainly health care professionals who use the term end of life care, whereas patients and their families are more likely to refer to terminal illness and terminal care. Whether you call it end of life care, or terminal care, or you refer to it in some other way, how do you know when someone is dying?

Some people take the view that everyone effectively starts to die from the day they are born. The reality of course is that it is never known exactly when someone is going to die from a life-threatening disease. Taking the approach of equating terminal care with "dying", some medical organisations define someone as being terminally ill when it is expected that there is only a short period of time, perhaps a few days or weeks, or at most a month or two, before the person is expected to die.

When someone is terminal ill, they may be cared for in hospital, they may be at home with home based care, or they may spend some time in a hospice. The aim of hospice care is to provide the best possible quality of life, and to relieve pain and other symptoms during the final days of a person’s life, at a time when the underlying disease can no longer be treated or cured. Hospice care is a philosophy of care which has been described as follows:

“You matter because you are you. You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.” Dame Cicely Saunders, 3 founder of the hospice movement

Hospice care is no longer provided only in buildings known as hospices, but many hospices now provide a “hospice at home” service. The difficulty with the word "hospice" can be the same as that of palliative care more generally, which is that when people go into a hospice, it is very often perceived by both the patient and their family, that it is not going to be long before they are going to die.

Difficulties caused by different definitions

Having a number of different definitions of both supportive care and palliative care has resulted in a considerable degree of confusion, not only for health professionals but also for patients. Not only are many people unsure about what palliative care is, and when it should be provided, but palliative care is in some circumstances part of supportive care, and in other circumstances it is the other way round with supportive care being part of palliative care.

Many people have only heard about palliative care as something that is provided in hospices for people who are dying. So another difficulty that can arise concerns people being offered palliative care early on in the course of a disease. Some people turn down the offer of palliative care believing that to accept will mean that they are terminally ill and going to die. They may also believe that they will no longer be offered any disease modifying or curative treatment.

Whatever you call it, the time at the end of life is different for each person, and each person has unique needs for information, support and care.

Palliative care and HIV/AIDS

At the start of the AIDS epidemic in the 1980s, palliative care was primarily regarded as the care of the dying, and for people in the last stages of AIDS. It was the approach to be adopted when there was no longer any possibility of treating the underlying disease and when further medical treatment would be inappropriate. There was an emphasis on pain and other symptom control, and on psychological, emotional and spiritual care.

When antiretroviral (ARV) treatment became available in high-income countries in the mid 1990s, it had a dramatic effect on the number of people dying from AIDS. HIV/AIDS started to be seen as a chronic condition with little need for palliative care. Many people viewed any talk of death and dying as being unduly negative.

Today, the long term outlook for people currently taking ARV treatment is still relatively unknown. Drug resistance still develops in people living with HIV and long term survival is often associated with an increased incidence of AIDS-related malignancies. Not everyone responds well to ARV treatment, with some people unable to tolerate it, and others diagnosed at a late stage when it’s less likely to work. In addition, in many low- and middle-income countries access to antiretroviral treatment is still low for many of those who need it, and therefore for some time there will continue to be people with advanced HIV disease or AIDS, who will benefit from palliative care.

At the same time, palliative care has also evolved, as it has been realised that palliative care should not necessarily be only for those people who are dying and who are approaching the end of their life. Many people now accept that some aspects of palliative care are applicable earlier in the course of a disease, and that it can often be integrated with acute care for HIV/AIDS. Palliative care is not only for those in the last stages of AIDS.

AVERT has more information about other types of care for people living with HIV/AIDS, including emotional needs and support, home-based care and treating AIDS-related pain.

 

References

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