Palliative care
Palliative care was defined by the World Health Organization in 2002, as: “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
Palliative care provides relief from pain and other distressing symptoms, affirms life and regards dying as a normal process, and intends neither to hasten nor to prolong death. Palliative care integrates the psychological and spiritual aspects of patient care, and offers a support system to help patients live as actively as possible until death. It also offers a support system to help the family cope during the patient’s illness and in their own bereavement. Using a team approach, palliative care addresses the needs of patients and their families, including bereavement counselling if necessary. It enhances quality of life, and may positively influence the course of the illness. It is applicable early in the course of the illness with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative care should be offered as needs develop and before they become unmanageable. Palliative care must not be something that only specialized palliative care teams, palliative care services or hospices offer when other treatment has been withdrawn. It should be an integral part of care and take place in any setting.
The needs of older people at the end of life
It is no surprise that most deaths in European and other developed countries occur in people aged over 65. None the less, comparatively little research has been carried out on their needs for palliative care. Older people very clearly have special needs, because their problems are different and often more complex than those of younger people.
• Older people are more commonly affected by multiple medical problems of varying severity.
• The cumulative effect of these may be much greater than any individual disease, and typically lead to greater impairment and needs for care.
• Older people are at greater risk of adverse drug reactions and of iatrogenic illness.
• Minor problems may have a greater cumulative psychological impact in older people.
• Problems of acute illness may be superimposed on physical or mental impairment, economic hardship and social isolation.
The complexity of the problems that older people have to suffer is revealed by epidemiological studies in which relatives or key informants are asked about the last year of the patient’s life. These show, in particular, that mental confusion, problems with bladder and bowel control, sight and hearing difficulties and dizziness all greatly increase with age.
The problems that many older people experience in the last year of life are therefore those of great age and its troubles as well as those caused by their final illness. All areas of health care that seek to provide continuity of care for older people, including general practice, geriatric medicine and rehabilitation, have recognized these wider needs for many years. Because it is more difficult to predict the course of many chronic diseases affecting older people, palliative care should be based on patient and family needs and not on prognosis. The examples of cancer, heart failure and dementia illustrate this point.
Cancer
The term cancer includes many illnesses that cause varying problems depending on the site of the body affected. The disease is more common with increasing age, and three quarters of deaths from cancer occur in people aged over 65. The most common cancers affecting women are breast, lung and colorectal cancer, while those most commonly affecting men are lung, prostate and colorectal cancer. Breast and prostate cancer have the best prognoses, followed by colorectal cancer and lung cancer. The prognosis for any individual depends on the extent of the growth at presentation and the response of the tumour to treatment, which may include surgery, radiotherapy and/or chemotherapy. People are not usually severely restricted in their activity until the final stages of the illness when the disease stops responding to treatment, but they have many psychological needs and require information and support from the time of diagnosis. In general, studies show that patients with cancer want more information, would like to be involved in decision-making, and experience better psychosocial adjustment if palliative care and good communication are part of their care from the time of diagnosis.
Heart failure
Heart failure affects more than one in ten people aged over 70, and the five-year mortality of 80% is worse than for many cancers. The course is often one of intermittent exacerbation of the symptoms of breathlessness and pain, causing great distress, followed by a gradual return to, or near to, the previous level of function. Death may follow a gradual decline or may be sudden during a crisis. Although there has been considerable progress in treating symptoms and crises well, patients and their families often have difficulty understanding and managing the complex drug regimes required. People with heart failure seem to have less formal knowledge of their diagnosis and prognosis. There appears to be a lack of open communication from health professionals about this, probably owing in part to the difficulty of prediction and an unwillingness to raise the subject. Families also report poor coordination of care and difficulties in forming a relationship with any single professional. These aspects of care therefore compare unfavourably to the information and support available to people with cancer.
Dementia
Dementia affects 4% of people over the age of 70, increasing to 13% of those over the age of 80. The median length of survival from diagnosis to death is eight years, and during this time there is a progressive deterioration in ability and awareness. Common symptoms include mental confusion, urinary incontinence, pain, low mood, constipation and loss of appetite. The physical and emotional burden on family members is well documented, as is their grief as they slowly lose the person they knew. Many ethical issues are also raised by the care of people with dementia who are unable to communicate their wishes. Current issues include the best use of antibiotics in the treatment of pneumonia and of feeding tubes for hydration and nutrition. However, less than 1% of patients in inpatient hospices have dementia as their primary diagnosis.
The needs of caregivers
Only relatively recently has the role of people caring for older seriously ill people been fully appreciated. There is relatively little formal knowledge about their needs, although their role varies considerably. It may include carrying out intimate tasks such as washing, helping people to dress and go to the toilet, or heavy tasks such as lifting. This kind of caring is usually performed by people with close kinship ties, often living in the same house and motivated by love and a desire to keep an older person out of an institution. However, the burden of care may lead in time to conflicting emotions, dealing with changes in personality and behaviour, restrictions on the carer’s own life, and the drain on financial resources. Long-term care for seriously ill relatives is unpaid and unsupported work that may damage the health, wellbeing and financial security of caregivers themselves.
A new way of looking at palliative care
As ageing populations develop new needs, health care systems need to be equally flexible in their response and perceptions about palliative care need to change. Traditionally, palliative care has been offered most often to people suffering from cancer, partly because the course of this illness is more predictable and it is thus easier to recognize and plan for the needs of patients and their families. One consequence of this has been the perception that palliative care is relevant only to the last few weeks of life and can be delivered only by specialized services. In fact, people and their families experience many problems throughout the many years of an illness and need help at the time and not at an easily definable point just before death. The idea that palliative support and care should be offered alongside potentially curative treatment, although obvious to patients and families, appears a radical idea for some health professionals. In addition to supporting people with a clearly terminal illness, health care systems must find ways of supporting people with serious chronic illness or multiple chronic problems over many years and allow for an unpredictable time of death.
Autonomy and choice
“Everyone has the right to … security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his [or her] control”.
Article 25, United Nations Universal Declaration of Human Rights, 2001
However complex a person’s problems or uncertain their future may be, autonomy is a key human right and maintaining this must be a core ethical value for society and health services. This has recently been incorporated into the concept of “patient-centred care” that many health care systems are now attempting to implement, which emphasizes the need to structure health care in response to people’s values and preferences.
“Patient-centred care is care that incorporates respect for patients’ values and preferences, provides information in clear and understandable terms, promotes autonomy in decision-making and attends to the need for physical comfort and emotional support”.
Preferences for place of care and death
There is increasing research evidence concerning the decisions that people would prefer to make about care at the end of their life. Most studies have found that around 75% of respondents would prefer to die at home. Those recently bereaved of a relative or friend are slightly more likely to prefer inpatient hospice care. A range of studies have found that between 50% and 70% of people receiving care for a serious illness also say they would prefer home care at the end of life (although as they approach death, part of this group may come to prefer inpatient care. A core value for palliative care from its inception has been in enabling people to make genuine choices about their care.
Source: Better Palliative Care for Older People
Edited By: Elizabeth Davies & Irene J Higginson
No comments:
Post a Comment