Does doctors' own fear of dying hinder palliative care?

Humans have a deeply rooted, existential fear of death that lurks suppressed in their unconscious most of the time. Dr. Balfour Mount, a palliative care specialist, thinks this is one of the factors preventing the health care system from providing good and compassionate care for the dying.     

Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Background:

The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children’s quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences.

Methods:

We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child’s quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique.

Results:

A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p < 0.0001). The opinions of the physician and child significantly influenced the parents’ desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision.

Interpretation:

Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.Despite the substantial improvements in rates of cure among children with cancer, some children will have progressive or recurrent disease and will die.¹ Cancer remains the second most common cause of death for North American children between 5 and 14 years of age.^2–4 When cure becomes unlikely, parents and health care professionals are often faced with the decision to continue further aggressive treatments or to provide relief from symptoms alone.¹The choice between palliative chemotherapy and supportive care alone is one of the most important and difficult decisions for parents of children whose disease cannot be cured.⁵ At this point, the goals of therapy are usually to maximize the child’s quality and length of life and to ensure respect for the family’s and child’s preferences.⁶Given the difficult nature of this decision, it is worthwhile to compare and contrast the perspectives of parents and health care professionals. Discordance in these perspectives could heighten the anxiety felt by patients and parents and might lead to their dissatisfaction with the care received. One qualitative study that interviewed parents of children with recurrent cancer found that “fearing disagreement with staff” was an important negative factor in decision-making.⁷ However, little is known as to whether the attitudes of parents and health care professionals toward therapeutic options are congruent.The goal of this study was to compare the strength of preference between parents and health care professionals for supportive care alone versus palliative chemotherapy for children whose cancer has no reasonable chance of being cured, and to determine how specific factors affect these preferences.     

Spiritual aspects of death and dying.

Dying is an event beyond our comprehension, an experience that can only be imagined. Patients with cancer have a gift denied many others: some time to prepare for the approaching end of life. This time can be used to bring old conflicts to a close, to say goodbye and seek forgiveness from others, to express love and gratitude for the gifts of a life. Physicians can help patients by being aware of the spiritual dimensions to life that many patients have. In major religious traditions, death is accepted as the natural end of the gift of life and as a point of transition to another, yet unknown, existence. For many patients, it is not death that is feared, but abandonment. The physician's awareness of the spiritual needs of patients can make care of the dying more rewarding and fulfilling for all concerned.     

Impact of remuneration and organizational factors on completing preventive manoeuvres in primary care practices

Background:

Several jurisdictions attempting to reform primary care have focused on changes in physician remuneration. The goals of this study were to compare the delivery of preventive services by practices in four primary care funding models and to identify organizational factors associated with superior preventive care.

Methods:

In a cross-sectional study, we included 137 primary care practices in the province of Ontario (35 fee-for-service practices, 35 with salaried physicians [community health centres], 35 practices in the new capitation model [family health networks] and 32 practices in the established capitation model [health services organizations]). We surveyed 288 family physicians. We reviewed 4108 randomly selected patient charts and assigned prevention scores based on the proportion of eligible preventive manoeuvres delivered for each patient.

Results:

A total of 3284 patients were eligible for at least one of six preventive manoeuvres. After adjusting for patient profile and contextual factors, we found that, compared with prevention scores in practices in the new capitation model, scores were significantly lower in fee-for-service practices (β estimate for effect on prevention score = −6.3, 95% confidence interval [CI] −11.9 to −0.6) and practices in the established capitation model (β = −9.1, 95% CI −14.9 to −3.3) but not for those with salaried remuneration (β = −0.8, 95% CI −6.5 to 4.8). After accounting for physician characteristics and organizational structure, the type of funding model was no longer a statistically significant factor. Compared with reference practices, those with at least one female family physician (β = 8.0, 95% CI 4.2 to 11.8), a panel size of fewer than 1600 patients per full-time equivalent family physician (β = 6.8, 95% CI 3.1 to 10.6) and an electronic reminder system (β = 4.6, 95% CI 0.4 to 8.7) had superior prevention scores. The effect of these three factors was largely but not always consistent across the funding models; it was largely consistent across the preventive manoeuvres.

Interpretation:

No funding model was clearly associated with superior preventive care. Factors related to physician characteristics and practice structure were stronger predictors of performance. Practices with one or more female physicians, a smaller patient load and an electronic reminder system had superior prevention scores. Our findings raise questions about reform initiatives aimed at increasing patient numbers, but they support the adoption of information technology.Primary care providers are increasingly interested in ensuring that preventive health care be part of their work routines.¹ This reorientation fits with the evidence that recommendations from family practitioners increase substantially the likelihood of patients undergoing preventive manoeuvres,² whereas the lack of such recommendations has been linked with patient noncompliance.^3,4Studies evaluating adherence to recommended preventive care suggest that the most pervasive barriers rest with the organization of the health care system and the practice itself, such as the absence of external financial incentives for the work done and the lack of a reminder system in the office.^3,5–9Countries attempting to reform their delivery of primary care and improve the delivery of preventive services have often directed their efforts in finding alternatives to the traditional fee-for-service model, in which providers receive payment for each service provided. There are two predominant alternative funding models: capitation (providers receive a fixed lump-sum payment per patient per period, independent of the number of services performed) and salaried remuneration. Some health care systems blend components of fee for service with either of these models or offer additional incentives for reaching defined quality-of-care targets. Despite considerable rhetoric, there is little evidence to point to the remuneration models associated with superior delivery of primary care services.¹⁰ The complexity of health care systems makes the evaluation of models through international comparisons difficult.In Canada, the province of Ontario has four primary care funding models (11

Table 1:

Characteristics of the four primary care models in the province of Ontario in 2005/06

The problem of caring for the dying in a general hospital; the palliative care unit as a possible solution.

The general hospital as a setting for terminal care has disturbing deficiencies: particularly, the medical, emotional and spiritual needs of the patients and their families are generally neglected. Consideration of the options for improving the situation led to the opening of the palliative care unit (PCU) at the Royal Victoria Hospital, Montreal, which is staffed by an interdisciplinary team with a positive and creative attitude to death and bereavement. The palliative care service comprises three areas of care -- the PCU itself, a domiciliary service and a consultative service -- as well as research, teaching and administrative functions.     

Barriers to psychological care of the dying.

Direct observation of doctors and nurses talking with real, stimulated, or role played patients suffering from a terminal illness has shown that they consistently use distancing tactics. These prevent them getting close to their patients'' psychological suffering and are used to try to ensure their own emotional survival. Since these tactics discourage patients from disclosing their psychological concerns they are a serious barrier to effective psychological care. If those concerned in terminal care are to risk relinquishing these distancing tactics they will need better selection, more appropriate training, regular psychological support, and real opportunities for taking time out.     

Impact of management practices on the tallgrass prairie

Summary The ELM ecosystem-level grassland model simulates the flow of water, heat, nitrogen, and phosphorus through the ecosystem and the biomass dynamics of plants, consumers, and the decomposers. This model was adapted to a tallgrass prairie site in northeastern Oklahoma, USA, the Osage Site of the U.S. International Biological Program Grassland Biome. Several range management manipulations were simulated by the model and the results compared to field data and literature information: (1) altering the grazing intensity, grazing system, and grazing time period; (2) adding nitrogen and phosphorus to the grassland; (3) adding water during the growing season; and (4) spring burning of the prairie.The model showed that cattle weight gain per head, above-ground and belowground plant production, transpiration water loss, standing dead biomass, and the net nitrogen balance decrease with increasing grazing intensity, while soil water content and bare soil water loss increase. A moderately stocked year-round cow-calf grazing system is more beneficial to the grassland than a more highly stocked seasonal steer grazing system because the former increases the aboveground and belowground primary production and the plant nutrient uptake rates. Range manipulations, such as fire, which stimulate uniform grazing of a pasture, increase primary production, cattle weight gains, and nutrient uptake of plants and animals. Model results indicated that adding fertilizer was the best strategy for increasing cattle weight gains per head, while adding water would produce the greatest increase in primary production. Simulation of yearly and triennial spring burns suggests that these treatments increase primary production, plant nutrient uptake, and cattle weight gain per head. Burning increases the nitrogen losses from the systems; however, these losses are greater with annual burns. The model results also suggest the spatial grazing pattern of cattle must be considered to correctly represent the impact of grazing on the prairie.The model is used to describe the behavior of the tallgrass prairie ecosystem, evaluate alternative management strategies, and identify future scientific research and management studies.     

Oral care training in the basic education of care professionals

doi:10.1111/j.1741‐2358.2009.00304.x
Oral care training in the basic education of care professionals Objective: To investigate the quantity and quality of oral care training in the basic education of future long‐term care (LTC) professionals in Norway. Background: The level of oral hygiene has often proved inadequate in LTC facilities. It has been maintained that this could be due to insufficient knowledge of oral care among care professionals. Materials and methods: A self‐administered questionnaire was sent to all 270 schools in Norway which offered basic education of LTC personnel in 2004/05. Information on theoretical and practical oral care training, scope of oral care in teaching material and curriculum, educational background of the teaching staff and schools opinion regarding adequacy of their training programme was collected. Results: Of the 203 respondents (75% response rate), 188 (participants) included oral care in their educational programme. Approximately two‐thirds of the participating schools provided 3 h or more of oral care training and many of the important themes were presented in the textbooks that were recommended. Moreover, the practical exercises performed in practice placement supplemented the knowledge. Conclusion: The results could not confirm that LTC professional’s basic education concerning oral care was inadequate. There may therefore be other explanations for the poor oral hygiene in many LTC facilities.     

Sharing death and dying: advance directives, autonomy and the family

This paper critically examines the liberal model of decision making for the terminally ill and contrasts it with the familial model that can be found in some Asian cultures. The contrast between the two models shows that the liberal model is excessively patient-centered, and misconceives and marginalises the role of the family in the decision making process. The paper argues that the familial model is correct in conceiving the last journey of one's life as a sharing process rather than a process of exercising one's prior or counterfactual choice, and concludes by suggesting a policy framework for the practice of familialism that can answer the liberal challenge that familialism cannot safeguard the patient from abuse and neglect.