Abstract
Dean A, Bear B: Is sedation at the end of life compatible with the principles of palliative care? End Life J 2015;0:1–9.
Palliative sedation has been a contentious issue for many years, largely due to uncertainty surrounding whether it may hasten death. Recently, it has also come under public and media scrutiny as part of the review of end-of-life practices initiated by concerns about the Liverpool Care Pathway for the Dying Patient. Research indicates palliative sedation is unlikely to shorten life, although robust evidence is lacking. While some view it as an essential tool for effective palliative care (PC), others have voiced concerns that sedation silences patients, removing autonomy and medicalizing the dying process. Implementing sedation within established guidelines that emphasize justification of aims and intent, communication with patients and relatives, and proportionate titration may improve care. However, it remains an ethically and legally complex area, and education of health care professionals is vital in supporting them with decision making. The authors seek to consider whether palliative sedation is compatible with the principles of PC. Areas of further research are identified and recommendations for practice are made, but it is concluded that clinicians would be doing patients a disservice if this procedure were not available to patients who have a clinical need.
Chambaere K, Bernheim JL: Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience. J Med Ethics 2015. E-pub ahead of print.
In 2002, physician-assisted dying was legally regulated in the Netherlands and Belgium, followed in 2009 by Luxembourg. A frequently expressed concern is that such legislation could stunt the development of PC and erode its culture. To study this the authors describe changes in PC development between 2005–2012 in the permissive Benelux countries and compare them with nonpermissive countries. The authors focused on the seven European countries with the highest development of PC, which include the three euthanasia-permissive and four nonpermissive countries. They compared the structural service indicators for 2005 and 2012 from successive editions of the European Atlas of Palliative Care. As an indicator for output delivery of services to patients, they collected the amounts of governmental funding of PC 2002–2011 in Belgium, the only country where they could find these data.
Results demonstrated that the rate of increase in the number of structural PC provisions among the compared countries was the highest in the Netherlands and Luxembourg, while Belgium stayed on a par with the United Kingdom, the benchmark country. Belgian government expenditure for PC doubled between 2002 and 2011. Basic PC expanded much more than endowment-restricted specialized PC. The authors conclude that the hypothesis that legal regulation of physician-assisted dying slows development of PC is not supported by the Benelux experience. On the contrary, regulation appears to have promoted the expansion of PC. Continued monitoring of both permissive and nonpermissive countries, preferably also including indicators of quantity and quality of delivered care, is needed to evaluate longer-term effects.
Visser C, Hadley G, Wee B: Reality of evidence-based practice in palliative care. Cancer Biol Med 2015;12:193–200.
There has been a paradigm shift in medicine away from tradition, anecdote, and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In PC, however, the authors argue that statistically significant benefits may be marginal and may not be related to clinical meaningfulness. They further suggest that typical treatment versus placebo comparison necessitated by gold-standard randomized controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end-of-life care involves considerations of the patient's physical, psychological, social, and spiritual needs. In addition, the field of PC covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies; and high attrition rates can result in inadequate follow-up periods. This review uses examples of the management of cancer-related fatigue and death rattle to demonstrate the current state of EBM in PC. The authors conclude that the future of EBM in PC needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity, and size conducted by collaborative research networks using a mixed methods approach are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes.
Swetenham K, Tieman J, Butow P, Currow D: Communication differences when patients and caregivers are seen separately or together. Intl J Palliat Nurs 2015. E-pub ahead of print.
Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a PC clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advance care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated; the patient sees the psychosocial nurse for coping and adjustment to illness, and the caregiver sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving.
This pilot study looked at the nature of communication in the clinic where patient and caregiver are together and compares that to when they are separated. A total of 33 patients and their caregivers agreed for their conversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n = 40) were coded for quantitative analysis. The codes identified content and function of speech, cues for information and emotion, and whether they were responded to by clinicians.
Results demonstrated that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion-related cues, as opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting. The authors conclude that an earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.
Westphal EC, Alkema G, Seidel R, Chernof B: How to get better care with lower costs? See the person, not the patient. J Am Geriatr Soc 2015. E-pub ahead of print.
The U.S. health system perceives people as “patients” almost exclusively as they enter and exit the health care system, but with this emphasis on context, have we lost sight of the people who should be in the foreground of care? Does such a view impede care effectiveness and efficiency? How can we shift our frame of reference moving forward? To foster this needed conceptual shift, a group of national thought leaders convened by the American Geriatrics Society (AGS) defined person-centered care to reorient the perspective toward individuals remaining in the center of pursuing high-quality care. This article explores how a person-centered care approach can improve health care effectiveness and efficiency, particularly for older adults with heightened health and daily living needs, and health care costs. The process for supporting a person-centered program is outlined, three critical indicators that define person-centered quality are highlighted, and several models that embrace the person-centered paradigm are briefly noted. Although there is no one-size-fits-all schematic, how and why overall success entails fidelity to essential elements of person-centered programs as the AGS expert panel identified is explained.
Walker W, Sque M: Balancing hope and despair at the end of life: The contribution of organ and tissue donation. J Crit Care 2015. E-pub ahead of print.
Concern for grieving family members can moderate the intentions of critical care staff to advocate deceased organ and tissue donation. Conversely, benevolent actions may provoke distress through missed opportunities to save or transform lives. This paper provides insight into the perceived benefits of organ and tissue donation for grieving families who experienced end-of-life care (EoLC) in the intensive care unit.
Data were collected via semistructured, face-to-face or telephone interviews with 43 participants from 31 donor families. Audio-recordings were transcribed verbatim and subjected to qualitative content analysis. Results demonstrated that findings affirmed the importance of person-centered EoLC. Donor families shared examples of good-quality care and communication that contained the hallmarks of compassion, respect, dignity, and choice. Consent to donation appeared to give meaning to the life and death of the deceased person and was comforting to some families in their bereavement. The authors conclude that their study underlined the significance of donation decision making for grieving families. Organ and tissue donation allows for hopes and expectations to be realized in the final days and hours of life. EoLC for the critically ill should embrace the families' desire to fulfil the wishes of the dying and deceased.