As the hospice and palliative care movement has expanded, evidence has grown for the effectiveness of aspects of the treatment and care it has promoted. Systematic reviews of the evidence, including studies on people with cancer from many different countries, now report consistently the importance of certain key areas of care. The evidence is currently strongest for simple measures such as pain relief, good communication and coordinated teamwork to satisfy preferences for place of care. There is also preliminary evidence for the application of models of palliative care for people with other illnesses.
Palliative care skills of individual health professionals
Pain and symptom control
The effectiveness of pain control methods has been established for over 30 years, and a wide variety of drugs is available to control pain associated with cancer and other illnesses. Observational studies show that, when clinical guidelines on pain control are followed, 70–97% of patients with advanced cancer gain adequate pain relief. Research on implementation has been relatively neglected, but education can improve the knowledge and attitudes of staff about pain (though not necessarily the levels of pain suffered by patients). There is most evidence for brief interventions, whereby nurses encourage patients to complete pain diaries and doctors use explicit strategies to ensure that pain is assessed daily and that drug dosages are adjusted accordingly. By comparison, the study of pain using standardized measures in older people with other illnesses has been relatively neglected.
Communication skills
Effective communication between doctors and patients is associated with a range of health outcomes including, most commonly, improvements in psychological health, symptoms and function and better control of pain, blood pressure and blood glucose level. The ability of health professionals to communicate effectively with families and involve them in decision making consistently emerges as an important contributor to their satisfaction with care at the end of life. The communication skills of health professionals can be improved by using feedback from videotaped consultations and discussion, but they nevertheless need further help to sustain these new skills in everyday practice.
Recordings or summaries of key consultations are of benefit to most cancer patients. They lead to improved knowledge and recall of information without causing psychological problems and to greater satisfaction. Nevertheless, these must be used sensitively with patients whose prognosis is poor, and account must be taken of whether or not they wish to know the full facts. In general, decision- making aids can help professionals deal with the concerns of patients, explain their treatment and improve their satisfaction.
Providing holistic care
Spiritual and religious needs are highly personal and salient to many people at the end of life, and therefore need to be part of palliative care services. There is some preliminary evidence that spiritual belief can affect the way in which patients cope, and even the outcome of the disease. It can also affect the way in which relatives cope with bereavement.
A wide range of psychological interventions has been tested in over 150 randomized trials over 40 years. The results were mixed and tended to vary by site of disease and follow-up period, with positive outcomes not being sustained over time. Most evidence exists for adjuvant psychological therapy, but more work is required to identify specific needs and how to target patients for intervention.
In the general population, complementary therapies tend to be used by younger women who perceive them as natural and allowing greater control. Despite interest in their use in palliative care, studies have so far been hampered by a lack of standard definitions, small sample sizes, poor response rates and inadequate measurement, and thus no adequate conclusions have been drawn.
An important issue in the care of older people is the transfer of information between settings, and between those with responsibility for medical care and those providing medical and social support services in the community. Current mechanisms are often inadequate and – although there is little empirical research in the area – a “key worker”, “case manager” or “case coordinator” seems the most effective way of transferring information.
A second issue is whether improved coordination of care can allow more patients to die at home if they so desire. Trials of different approaches to coordinating hospital and community services are now finding that a higher proportion of people can be helped to die at home if they wish. There is also evidence that the quality of life of their caregivers can be improved if support is provided and well coordinated.
Supporting families and caregivers
A range of services has been developed, including home care, respite and “sitting” services, activities within social networks, support groups and individual psychotherapy or education. Carers generally report satisfaction with home care and, if they are willing to leave the patient, value respite and sitting services. The few who take up group activities or support groups value the chance to talk openly with others, but formal evaluation of their benefit is weak. Further work is needed to explore the priorities of caregivers and what it is realistic for services to achieve for them. Here it is important to remember that giving caregivers the impression of being listened to and appreciated is in itself an important goal of care.
Anxiety and depression are normal responses to loss and the threat of loss in lifelong relationships. Health professionals who meet people at the very end of these relationships may
Expressed by patients and their families (combined odds ratio 0.38, 95% CI 0.33– A common model for delivering palliative care has been to concentrate expertise in multi professional teams that work in hospitals, inpatient units such as hospices or within the community. These teams usually deal with a selected group of patients, referred to them by other teams of professionals, who have the most complex needs for symptom control, communication and coordination of care. Despite conflicting findings in initial reviews, meta-analysis now reveals benefits for both patients and families in terms of the control of pain and other symptoms and the satisfaction 0.44).
There is evidence that patients value attending palliative day care units, where they can meet other patients, talk to staff and become involved in activities. There is no evidence as yet, however, that such attendance affects other outcomes such as quality or life or symptom control.
In several studies, the relatives of patients dying in the care of specialist palliative care services reported fewer psychological symptoms and unmet needs than those of patients receiving standard care. Assessing the need for support and counselling after bereavement is regarded as an important part of palliative care. There is relatively little evidence, however, for the predictive power of assessments, the targeting of individuals or the benefit of individual therapy, although these aspects are very difficult to evaluate.
Multidisciplinary teams are one way of caring for people with complex problems, and already have an established role in geriatric medicine and the care of people with specific disorders. For example, team management of people with cardiac failure can reduce their hospital admissions and prolong survival.
On balance, studies so far show that specialist nurse support can also help patients with heart failure and improve continuity of care. Patients in the care of respiratory nurses live longer but do not have a better quality of life; they none the less place value on home visits from nurses.
Pilot studies on the provision of palliative care and hospice services for patients in the end stages of dementia suggest they can make patients more comfortable and help carers.
There has recently been considerable interest in advanced care planning, whereby people can decide the care they would wish to have if they were to be diagnosed with a life-threatening illness. Such plans provide a written record of people’s desires and preferences for health professionals and their relatives to follow if they become unable to make these decisions for themselves. Despite hopes that these might reduce the number of unwanted interventions at the very end of life, there is no evidence that such plans are always followed or that they influence the use of resources or costs. More comprehensive methods are now being explored. Equally, there is little evidence for the effectiveness of intensive care in meeting the palliative care needs of older people.
Generalizability of findings
Research on meeting the needs of people experiencing and dying from diseases other than cancer is less well advanced. There is little specific information on effective methods for nursing or residential homes to meet palliative care needs, or of the needs of people aged over 80 in any setting. In general, there is also a lack of evidence from implementation research on how to get established evidence translated into practice. The comparatively uncertain prognoses of non-cancer illnesses make it more difficult to plan services. Nevertheless, simple measures such as good pain relief, communication, information and coordinated care from skilled professionals are effective in reducing symptoms and suffering. It is unlikely that these experiences differ widely by disease or across countries. This strongly suggests that it is time to make a more active and concerted effort to improve palliative care, concentrating on the implementation of simple effective measures based on the complexity and seriousness of the illness and on the needs of patient and family.
Edited by:Elizabeth Davies & Irene J Higginson
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