Rod MacLeod

Care and compassion: Part of person-centred rehabilitation, inappropriate response or a forgotten art?

Aims of the paper. The nature of healthcare, rehabilitation and indeed even professional practice and discipline roles seems to constantly change. In particular, whilst ‘care’ has an accepted place in much of health service delivery, there is considerable debate about whether the concept has a place in modern rehabilitation. This paper sets out to review the concept and pose questions about the nature of caring in rehabilitation. Key findings and implications. In order to highlight different potential understandings, this paper reviews the origins of healthcare traditions and care. We explore ethical humanistic and political aspects of caring and investigate what facilitates and obstructs adequate care. Finally we examine what the risks of caring (or not caring) are for both health professionals and their clients. Conclusions and recommendations. Whilst the arguments presented here suggest there is value in caring, there are very limited studies that explicitly examine its nature or indeed value, particularly in rehabilitation. As a result, the potential difference in both the experience of, and outcome, from rehabilitation in relation to the nature of care is yet to be clearly established.

Management of Breakthrough Pain in Patients with Cancer

Breakthrough pain (BTP) in patients with cancer lacks a consensus definition and is subsequently inadequately diagnosed and assessed, therefore making it more challenging to manage. Cancer pain is generally moderate to severe in intensity and persistent in nature. Despite the problematic definition of BTP, it is generally described as having similar intensity, but may also be transitory and variable in predictability. Most breakthrough analgesia fails to be effective in the time required for BTP. No useful analgesia is therefore provided but drug adverse effects escalate. Cancer pain management relies on the WHO analgesic ladder. The frequency of BTP and its inadequate management means that it has significant adverse effects on patients, their families and those involved in their care. This article outlines a systematic, clinical and evidence-based approach to managing BTP in patients with cancer that emphasizes a holistic approach and an understanding of multidimensional ‘total pain’. Guidelines for managing BTP are presented and areas of developing research are identified.

Learning to care: a medical perspective

The development of palliative care as a recognizable specialty has been supported by an acknowledgment of palliative medicine as a discrete discipline within the medical profession. While the knowledge and skills required for training in palliative medicine are well defined, there are elements of the medical care of people at the end of life that are more difficult to outline. Nursing practitioners and academics in particular have made important contributions in defining caring as an entity, and published work in the field of nursing, bio-ethics and philosophy has encouraged an understanding of what caring is and how it is practised. However, it has rarely been addressed specifically in the medical literature. Undergraduate and postgraduate curricula outline some of the attitudes required to practise palliative medicine but the way in which doctors learn to care and indeed should care has not been clearly detailed. This paper reviews some of the literature pertinent to this aspect of palliative care, with particular reference to some of the elements that may influence how and why doctors learn to care in the way that they do in their practice of medicine.

Characteristics influencing location of death for children with life-limiting illness

Objective To determine whether demographic and diagnostic characteristics were associated with location of death in a series of children with life-limiting illnesses. Design A population-level case series was carried out by reviewing mortality records. Sociodemographic characteristics, diagnosis and referral to paediatric palliative care (PPC) were analysed for association with location of death. Setting New Zealand Participants Children and young people aged 28 days–18 years who died from a life-limiting illness between 2006 and 2009 inclusive. Main outcome measures Location of death—home, hospital, other. Results Of 494 deaths, 53.6% (256/494) died in hospital and 41.9% (203/494) died at home. Asian (OR=2.66, 95% CI 1.17 to 6.04) and Pacific children (OR=2.22, 95% CI 1.15 to 4.29) had an increased risk of death in hospital compared with European children, while children with cancer (adjusted OR=0.48, 95% CI 0.3 to 0.75) and children referred to the PPC service (adjusted OR=0.60, 95% CI 0.38 to 0.96) had a decreased risk. Population-attributable risk for referral to the PPC service was 28.2% (95% CI 11.25 to 47.75). Conclusions Most children in New Zealand with a life-limiting illness die in hospital with a significant influence resulting from ethnic background, diagnosis and referral to the PPC service. These findings have implications for resourcing PPC services and end-of-life care.

Access to palliative care services in hospital: a matter of being in the right hospital. Hospital charts study in a Canadian city

Access to palliative care (PC) is a major need worldwide. Using hospital charts of all patients who died over one year (April 2008–March 2009) in two mid-sized hospitals of a large Canadian city, similar in size and function and operated by the same administrative group, this study examined which patients who could benefit from PC services actually received these services and which ones did not, and compared their care characteristics. A significantly lower proportion (29%) of patients dying in hospital 2 (without a PC unit and reliant on a visiting PC team) was referred to PC services as compared to in hospital 1 (with a PC unit; 68%). This lower referral likelihood was found for all patient groups, even among cancer patients, and remained after controlling for patient mix. Referral was strongly associated with having cancer and younger age. Referral to PC thus seems to depend, at least in part, on the coincidence of being admitted to the right hospital. This finding suggests that establishing PC units or a team of committed PC providers in every hospital could increase referral rates and equity of access to PC services. The relatively lower access for older and non-cancer patients and technology use in hospital PC services require further attention.

Spirituality: what is its role in pain medicine?

BACKGROUND For many years, spirituality has been regarded as an integral aspect of patient care in fields closely allied to pain medicine such as palliative and supportive care. Despite this, it has received relatively little attention within the field of pain medicine itself. Reasons for this may include a lack of understanding of what spirituality means, doubtfulness of its relevance, an uncertainty about how it may be addressed, or a lack of awareness of how addressing spirituality may be of benefit. METHODS A review of the literature was conducted to determine the changing conceptual frameworks that have been applied to pain medicine, the emergence of the biopsychospiritual approach and what that means as well as evidence for the benefits of incorporation of this approach for the management of pain. RESULTS Although the concept of spirituality is broad, there is now greater consensus on what is meant by this term. Many authors and consensus panels have explored the concept and formulated a conceptual framework and an approach that is inclusive, accessible, relevant, and applicable to people with a wide range of health conditions. In addition, there is accumulating evidence that interventions that address the issue of spirituality have benefits for physical and emotional health. CONCLUSIONS Given the firm place that spirituality now holds within other fields and the mounting evidence for its relevance and benefit for people with pain, there is increasing evidence to support the inclusion of spiritual factors as an important component in the assessment and treatment of pain.

Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data

Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patients, the proportion dying at home ranged from 10.4% in Canada to 55.4% in Mexico, while hospital deaths ranged from 41.8% in Mexico to 78.9% in South Korea. Controlling for age, sex, and marital status, patients with chronic obstructive pulmonary disease were significantly less likely die at home rather than in hospital in nine countries. Our study found in almost all countries that those dying from chronic obstructive pulmonary disease as compared with those from lung cancer are less likely to die at home and at a palliative care institution and more likely to die in a hospital or a nursing home. This might be due to less predictable disease trajectories and prognosis of death in chronic obstructive pulmonary disease.Lung disease: improving end-of-life careStructured palliative care similar to that offered to cancer sufferers should be in place for patients with chronic lung disease. Joachim Cohen at Vrije University in Brussels and co-workers examined international death certificate data collected from 14 countries to determine place of death for patients with lung cancer and chronic obstructive pulmonary disease (COPD). While patients with COPD suffer similar symptoms to lung cancer in their final days, few COPD patients receive palliative care or achieve the common wish of dying at home. This may be partly due to the inherent unpredictability of final-stage COPD compared with lung cancer. Cohen’s team found that, with the exception of Italy, Spain, and Mexico, patients with COPD were significantly more likely to die in hospital than at home. They highlight the need for improved COPD palliative care provision.

Examining linkages between bereavement grief intensity and perceived death quality : qualitative findings

Some people experience more intense and prolonged bereavement grief after the death of a loved one. A mixed-methods study was undertaken out of concern that bereavement grief intensity may be associated with survivor perceptions of a “good” or “bad” death. The qualitative study phase was undertaken after a pilot study revealed bereavement grief intensity and perceived death quality were close to being negatively correlated (R = −.156, p = .06). Through interviewing 41 bereaved volunteers, bereavement was found to be an individualized, contextualized, and multifaceted experience, but with three themes emerging through constant-comparative analysis: (a) the huge loss and enormous gap in life as a result of the death of a loved one, (b) extreme acute grief, and (c) the uncertain step-laddered journey of grieving to bereavement recovery. This recovery is impacted by both good and bad aspects of the death or dying process, as well as good and bad after-death events and developments.

Spirituality in Renal Supportive Care: A Thematic Review

Chronic kidney disease is marked by a reduced life expectancy and a high symptom burden. For those who reach end-stage renal disease, the prognosis is poor, and this combined with the growing prevalence of the disease necessitates supportive and palliative care programmes that will address people’s psychosocial, cultural and spiritual needs. While there is variation between countries, research reveals that many renal specialist nurses and doctors are reluctant to address spirituality, initiate end-of-life conversations or implement conservative treatment plans early. Yet, other studies indicate that the provision of palliative care services, which includes the spiritual dimension, can reduce symptom burden, assist patients in making advanced directives/plans and improve health-related quality of life. This review brings together the current literature related to renal supportive care and spirituality under the following sections and themes. The introduction and background sections situate spirituality in both healthcare generally and chronic kidney disease. Gaps in the provision of chronic kidney disease spiritual care are then considered, followed by a discussion of the palliative care model related to chronic kidney disease and spirituality. Chronic kidney disease spiritual needs and care approaches are discussed with reference to advanced care planning, hope, grief and relationships. A particular focus on quality of life is developed, with spirituality named as a key dimension. Finally, further challenges, such as culture, training and limitations, are explicated.

A scoping review of bereavement service outcomes

OBJECTIVE This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness. METHOD Our methods included: (1) a literature search for published English-language research articles from 2005-2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings. RESULTS Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value-most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them. SIGNIFICANCE OF RESULTS This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.