Living with the dying: use of the technique of participant observation.

Through participant observation, questions concerning optimal care of dying patients and needs of their families were answered. A general surgical ward and a palliative care unit were the sites of observation. The observations support the belief that a palliative care unit, specifically designed to meet the known needs of dying patients and their families, is preferable to a general surgical ward. The main findings, of less concern in the palliative care unit than on the surgical ward, were the following: the importance of patient-to-patient support; the discomfort of sick-role behaviour; the impersonal and sometimes intimidating nature of patient care; the limitation of the patient''s need (as a person) to give as well as to receive; and the value of families, student nurses and volunteers in total care. These findings emphasize the importance of personal interest in relieving the distress suffered by many terminally ill patients.     

Dr. Balfour Mount and the cruel irony of our care for the dying.

Dr. Balfour Mount of Montreal thinks that the health care system, because of its fixation on disease processes, may have forgotten that it also has a mandate to alleviate suffering. "We need to recapture that vision," says Mount, who describes palliative medicine as a "rich combination" of clinical pharmacology, rehabilitation medicine and internal medicine. Mount says there is a cruel irony in our care of the dying. "Although these are the sickest people in our health care system, when medical technology doesn''t know what to do, the quality and quantity of care falls away. How can we justify that?"     

Palliative Care among Heart Failure Patients in Primary Care: A Comparison to Cancer Patients Using English Family Practice Data

Introduction

Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level.

Methods

This was the first use of Clinical Practice Research Datalink, the world''s largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care.

Results

Among patients with heart failure, 7% (234/3 122) were entered on the palliative care register compared to 48% (3 669/7 608) of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234) were entered onto the register within a week of their death.

Conclusions

This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.     

Rawlsian Justice and Palliative Care

Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare. We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable to provide pain relief to those who need it as a supplement to treatment and, without justice‐based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.     

Parkinson's disease.

In Parkinson''s disease there is degeneration of neurons in the substantia nigra, with consequent depletion of the neurotransmitter dopamine. The triad of tremor, rigidity and bradykinesia is the clinical hallmark. Drugs currently used for palliative therapy fall into three categories: anticholinergic agents, dopamine precursors (levodopa combined with extracerebral decarboxylase inhibitors) and artificial dopamine agonists. It has been argued, on theoretical grounds, that some drugs slow the progress of Parkinson''s disease, although no firm evidence has supported this. Treatment must be individualized, and more than one type of drug can be given concurrently after a careful build-up in dosage. We review the adverse effects of various drugs and consider new developments such as slow-release preparations, selective D-1 and D-2 agonists and transplants of dopaminergic cells into the brain. The treatment of Parkinson''s disease can be demanding, rewarding and sometimes frustrating, but it remains a most challenging exercise in pharmacotherapy.     

Babies with spina bifida treated without surgery: parents' views on home versus hospital care.

From 1971 to 1981, 98 babies born with meningomyelocoele at the North Staffordshire Hospital Centre''s district maternity hospital, were thought not suitable for surgery. Sixty three survived for more than one week. Over the period the hospital''s policy changed: initially all such babies were kept in hospital, but later parents were given the choice of taking their baby home for palliative and terminal care. In an attempt to determine parents'' views on the care of their baby the parents of 44 of the babies who survived to one week were traced in 1985-6, five to 14 years later; 80 of them were asked how they felt about the lives and deaths of their babies. Eighteen babies had been taken home, and they had lived longer than the 26 who had been cared for in hospital. Parents whose baby had remained in hospital were sadder than those who had taken their baby home when they looked back at their experiences, and they also considered that their baby''s life had been of poor quality. Most of those who had taken their baby home had a more positive view of their child''s life. The figures suggest that the bereavement process after a baby''s death is longer than has been thought, but despite residual sadness just over half of the parents interviewed thought that something positive had come out of their experience.     

CMA-cosponsored conference raises many questions about future of regionalized health care.

Is regionalization better because it''s cheaper? Or because it provides better outcomes? Or simply because it''s different from whatever went before? Those were some of the questions asked during a recent conference cosponsored by the CMA and Queen''s University. With each successive speaker, says Charlotte Gray, the message became clearer: there are more muddled theories behind the trend and more pitfalls ahead than planners ever expected when they embarked on the exercise to decentralize health care in Canada and elsewhere.     

Should living wills be legalized?

Living wills allow patients to state their wish to die and not be kept alive through the use of medications, artificial means or "heroic" measures. They have been made legal documents in 38 states in the United States. Living wills permit advance expression of a patient''s wishes, promote effective communication and demonstrate respect for the patient as a person. Problems with legal recognition of such wills include the need for agreement on fundamental terms, possible restriction of patients'' rights, limitation of options in decision-making and possible negative effects on the physician-patient relationship. Before legislation is enacted, public and professional attitudes toward the care of terminally ill patients should be assessed. All health care professionals should receive better education in this area, and palliative care services should be made more widely available. Only if these measures fail should living wills be made legal documents in Canada.     

The goals of direct paternal care among a South Amerindian population

Human males are remarkable among mammals in the level of investment they provide to their wives and children. However, there has been debate as to the degree to which men actually invest and through which fitness pathways the benefits of familial investment are realized. Much of the previous research exploring these issues has focused on men's roles as providers, but few have explored correlates of men's direct parental care. Although this is reasonable given men's parental emphasis on provisioning, the providing of direct care is more straightforward with a clear provider and recipient and little ambiguity as to the care‐giver's intent. Here, we explore contextual correlates of men's direct care among the Tsimane of Bolivia to determine the extent to which such care is patterned to enhance its effectiveness in increasing child wellbeing and the efficient functioning of the family. We also explore whether Tsimane fathers provide care in ways that enhance the positive effect it has on the wife's perception of the care provider. Overall, we find that Tsimane men appear responsive to the needs of children and the family, but show that there is little evidence that men respond to factors expected to increase the impact that men's care has on their reputations with their wives. Am J Phys Anthropol 2009. © 2009 Wiley‐Liss, Inc.     

The private sector invades medicare's home town

If Canada''s medicare system has a home town it is probably Ottawa, where the system was first welded together 30 years ago. Charlotte Gray reports that there is a certain irony now that examples of private health care are sprouting up in the nations''s capital.     

What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey

Background

Many people who might benefit from specialist palliative care services are not using them.

Aim

We examined the use of these services and the reasons for not using them in a population in potential need of palliative care.

Methods

We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium.

Results

Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer).

Conclusions

Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority.     

Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study

Background

In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient''s life.

Methods and Findings

Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.

Conclusions

Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care. Please see later in the article for the Editors'' Summary     

Attitudes of California Dermatologists Toward Worker's Compensation: Results of a Survey

A survey-questionnaire on Worker''s Compensation sent to 492 California dermatologists produced 268 replies, a recovery rate of 54 percent, representing approximately 10 percent of the practicing dermatologists in the United States. A total of 75 percent replied they treat Worker''s Compensation patients; most of the 25 percent who replied they do not gave strong reasons for refusing to assume the care of these patients. The answers to the questionnaire given by the 201 California dermatologists who treat Worker''s Compensation patients are tabulated and discussed. Although there exists considerable misunderstanding among physicians, insurance companies and employers on many aspects of Worker''s Compensation, the situation is not without hope for improvement. Better knowledge of work procedures, more availability of precise information on the ingredients of work contactants and cooperation among the interested parties should improve the quality of care for these patients in the future.     

Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners

Background

Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care.

Methods

Cross-national retrospective study. Over two years (2009–2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (≥18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded.

Results

We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care.

Conclusions

Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies.     

Radiation oncologists role,training and perceptions in palliative care: a systematic review

AimTo assess the educational needs, role and perceptions in palliative care issues of radiation oncologists (ROs) and trainees.Background1/3 of radiotherapy patients are treated with palliative intent. Conversely, education and role that ROs have in the palliative care process are not well established, neither in terms of how they perceive their competence nor whether it is important to improve training, research and attention in palliative care issues at radiotherapy congresses.Material and MethodsLiterature systematic review in National Library of Medicine and Cochrane databases with 11 relevant issues to be identified. One doctor made first selection of articles, a second one confirmed their eligibility.Results722 articles reviewed, 19 selected. 100% recognize the importance of palliative care in radiotherapy, 89.4% the need of training in palliative care for ROs, 68.4% the necessity of improving the resident programs, 63.1% the importance of skilled ROs in palliative care, 63.1% the need of better communication skills and pain management (47.3%), 52.6%, the perception of inadequate training in palliative care, 36.8% the lack of research and palliative care topics in radiotherapy meetings, 21% the absence of adequate guidelines regarding palliative care approaches, 42.1% the importance of the ROs in palliative care teams and 26.3% the lack of their involvement.ConclusionPalliative care has an important role in radiotherapy but it seems ROs still need more training. It is necessary to improve training programs, increment palliative care research in radiotherapy, giving more attention to palliative care themes at radiotherapy congresses. This could lead to a better integration of radiotherapists in multidisciplinary palliative care teams in the future.     

Assistants to Primary Physicians in California

The mid-level practitioner movement is no longer experimental; nurse practitioners and physician''s assistants in California have proved to fill a necessary and viable professional role in the delivery of primary health care. The physician''s assistant law (AB2109) and the Experimental Manpower Act (AB1503) have facilitated the training and functioning of these new health care professionals; more comprehensive laws are still needed to permit optimal utilization. National agencies for approval of teaching programs and testing of individual graduates will play an increasing role in the accreditation and certification procedures. Professional role difficulties, issues of sex and questions of delegation of responsibility are being resolved and it is hoped that a more equitable and patient-oriented system is evolving.     

Long-term digoxin treatment in general practice.

A questionnaire was sent to several general practitioners and specialists in an attempt to obtain a consensus on standards of care for patients receiving long-term digoxin treatment. The consultants'' suggested standards were slightly more stringent than those of the general practitioners. The records of 42 patients taking digoxin under the care of two general practitioners were studied to see how far their actual care matched up to the suggested standards. The models of management proposed by these patients'' doctors were only slightly different from those suggested by other practitioners, but measured against these models the patients'' care was in some cases inadequate. Nevertheless, there was little relationship between the recorded levels of care and the health of the patient, and it may have been the standard of recording rather than the care that was inadequate. Measuring plasma digoxin levels in these patients proved to be of little value. Medical audit is thus a useful tool in helping the general practitioner to review his work and improve his knowledge, but it may not be a practical or true way of measuring the quality of care.     

Evaluation of a palliative care service: problems and pitfalls.

OBJECTIVE--To evaluate a palliative care home support team based on an inpatient unit. DESIGN--Randomised controlled trial with waiting list. Patients in the study group received the service immediately, those in the control group received it after one month. Main comparison point was at one month. SETTING--A city of 300,000 people with a publicly funded home care service and about 200 general practitioners, most of whom provide home care. MAIN OUTCOME MEASURES--Pain and nausea levels were measured at entry to trial and at one month, as were quality of life for patients and care givers'' health. RESULTS--Because of early deaths, problems with recruitment, and a low compliance rate for completion of questionnaires, the required sample size was not attained. CONCLUSION--In designing evaluations of palliative care services, investigators should be prepared to deal with the following issues: attrition due to early death, opposition to randomisation by patients and referral sources, ethical problems raised by randomisation of dying patients, the appropriate timing of comparison points, and difficulties of collecting data from sick or exhausted patients and care givers. Investigators may choose to evaluate a service from various perspectives using different methods: controlled trials, qualitative studies, surveys, and audits. Randomised trials may prove to be impracticable for evaluation of palliative care.     

NARRATIVES OF ‘TERMINAL SEDATION’, AND THE IMPORTANCE OF THE INTENTION‐FORESIGHT DISTINCTION IN PALLIATIVE CARE PRACTICE

The moral importance of the ‘intention–foresight’ distinction has long been a matter of philosophical controversy, particularly in the context of end‐of‐life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating ‘slow euthanasia’. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in‐depth interviews to address the use of sedation at the end of life. The majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one's intention, and where there may be some ‘mental gymnastics,’ the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of ‘terminal’ sedation – cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles.