Barry Ashpole Media Watch #498

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

Articles from Asia Pacific regions:

Branding palliative care units by avoiding the terms “palliative” and “hospice”: A nationwide study in Taiwan

INQUIRY: THE JOURNAL OF HEALTH CARE ORGANIZATION, PROVISION & FINANCING | Online – 24 January 2017 – The term “palliative care” has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. In this study, the authors found that words reflecting the themes of “kindness and love”, “peace” and “religion” were frequently used. This finding suggests the hypothesis that less stigmatising names were used to generate more positive impressions, higher perceived need, and more referrals.

End-of-life care and opioid use in India: Challenges and opportunities

JOURNAL OF GLOBAL ONCOLOGY | Online – 25 January 2017 – Ease of access to opioid pain medications is an integral component of palliative care service. In India, poppy plants are grown only in three states, under strict government licensing, with only two factories processing them into morphine sulfate powder. Awareness of opioid medications increased during the early 1980s, which in turn increased morphine use, raising concerns regarding diversion of the medication. Balancing these virtues and vices in a cost-effective setting, within this multicultural society is a gargantuan task that the Indian government and palliative care community has currently undertaken. The palliative care community is optimistic about the new NDPS amendment, which may help make pain relief accessible to millions.

Specialist Publications:

Promoting end-of-life discussions in advanced cancer: Effects of patient coaching and question prompt lists

JOURNAL OF CLINICAL ONCOLOGY | Online – 30 January 2017 – Most patients with advanced cancer say they want honest, sensitive communication about end-of-life issues. These conversations help patients and their families prepare, make informed decisions, and avoid potentially burdensome aggressive medical treatments near death. Yet, patients are often misinformed about cancer survival and curability, and those with over-optimistic prognosis estimates are more likely to die in a hospital and receive burdensome aggressive care. Patients often do not disclose their concerns and vary in the amount of information they want about the disease, prognosis, and treatment options, whereas physicians often do not know or enact patient preferences about end-of-life issues. . Interventions to promote communication in cancer settings have targeted patients and physicians. Randomized controlled trials in early cancer and palliative care have shown that question prompt lists (QPLs) – structured lists of questions given to patients before consultations – help patients with cancer and their caregivers ask more questions, particularly if the physician also encourages and endorses the QPL. In addition, a tailored pre-visit educational coaching intervention (that did not involve QPLs) helped patients with cancer communicate concerns about pain.

A matter of life and death: Knowledge about the body and concept of death in adults with intellectual disabilities

JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2017;61(1):89-98. An increased awareness of how people with intellectual disabilities (ID) understand death and dying is necessary in supporting life-long learning, post-bereavement support and planning end-of-life care. However, the assumption that adults with ID have no concept of death and therefore are unable to grieve, has been discredited, and it is now widely accepted that an incomplete understanding of death is not necessarily a barrier to experience grief. The analysis of participants’ responses shows that those individuals who are able to reason about the human body were more likely to achieve significantly higher concepts of death scores. Clearly, there is a need for focused interventions aimed at developing further this embryonic biological understanding.

Funding models in palliative care: Lessons from international experience

PALLIATIVE MEDICINE | Online – 3 February 2017 – Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. Variation in the palliative care services exists not only in the type and content of services provided but also in the ways that palliative care services are funded. One of the implications of variability in funding mechanisms is the ability to conduct large-scale health economics research on palliative care is dependent on having a clear signal of palliative care provision in the administrative data generated, and the strength of the data signal is driven by the funding model.

Barry Ashpole Media Watch #497

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

Articles from Asia Pacific regions:

Access to psychologists in aged care is an “urgent priority,” Councils on the Ageing tells minister

AUSTRALIA | Australian Ageing Agenda – 24 January 2017 – Council on the Ageing Australia is calling on the new health minister Greg Hunt to allow nursing home residents the same access to mental health services as everyone else. The Australian Psychological Society last week called on the government to allow residents to access the Better Access initiative, which provides 10 subsidised sessions with a psychologist through Medicare. Given the high incidence of depression and other mental health conditions suffered by residents of aged care facilities there is clearly a problem that needs to be urgently addressed, COTA chief Ian Yates said. “A person receiving a high level home care package in their own home can make use of the Better Access program. Yet people living in an aged care home around the corner cannot.”

Managing ethical dilemmas in end-stage neurodegenerative diseases

GERIATRICS | Online – 20 January 2017 – This article discusses the many ethical and moral dilemmas faced by the clinician and family members as they care for patients with neurodegenerative illnesses approaching the end of life. Topics discussed include steps on how to assess mental capacity and decisionmaking capability, advance care planning, withholding and/or withdrawing treatment, food refusal, the donot-resuscitate order, and euthanasia. An approach to ethical decision-making incorporating Jonsen’s 4- topic approach is also be discussed briefly.

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

CANCER | Online – 24 January 2017 – This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days or, very occasionally, weeks. Further, this paper explores the incidence and management of problems that may affect the dying person which are most feared by their family.

International news:

Oncologists could improve prognosis communication: Study

COLORADO | United Press International – 24 January 2017 – Researchers from the University of Colorado Anschutz Medical Campus found that accurate prognosis of incurable cancer is vital to end-of-life decision making. The study looked at 64 doctor-patient conversations regarding cancer prognosis at four major academic medical centers and found that both patients and doctors tend to avoid end-of-life discussions regarding terminal cancer diagnosis. Researchers found that just 10 percent of the conversations were about scan results, and there were only four instances where oncologists discussed prognosis with patients.

Wyoming Senate approves palliative care

WYOMING | KGAB Radio News (Cheyenne) – 24 January 2017 – The Wyoming Senate on Tuesday approved a bill creating a palliative care council for the state. The bill would create a volunteer council to advise the state on palliative care issues, including care for those in state institutions who may be suffering from terminal illness. While the council would be composed of volunteers, Scott says his bill does allow the governor to compensate council members for mileage and with a per diem if the money is available.

Specialist Publications:

Palliative care in humanitarian medicine

PALLIATIVE MEDICINE | Online – 23 January 2017 – Palliative care interventions have historically been neglected in the practice of humanitarian medicine. This may come as a surprise, since it is a sombre reality that medical practitioners are frequently witness to death and dying in their response to humanitarian crises. The exceptionally high mortality rates associated with the West African Ebola outbreak have prompted further reflection on the role of palliative care in humanitarian crises. A similar trend was seen during the height of the HIV/AIDS epidemic in the late 1990s, as health actors were faced with the need to focus on palliative care in the absence of affordable anti-retroviral treatment (ART).

Compassionate Communities and Their Role in End-of-Life Care

UNIVERSITY OF OTTAWA JOURNAL OF MEDICINE | Online – Accessed 28 January 2017 – Death is a universal experience that has often been underrepresented in discussion between loved ones and the healthcare system. Development of Compassionate Communities promotes quality end-of-life care designed to meet the individualized needs of the dying as well as their caregivers. Creating Communities of Practice focused on implementing the values of Compassionate Communities would promote a fertile environment for community-based end-of-life care that sees each person as unique and adapts to meet the needs of both patients and caregivers, thereby reducing individual burden and burnout, and improving the experience for all.

Barry Ashpole Media Watch #496

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

International Publications:

Doctor hits the road to deliver palliative care to Toronto’s homeless

ONTARIO | CBC News (Toronto) – 17 January 2017 – Dr Naheed Dosani is a palliative care doctor in Toronto, but his patients are in homeless shelters, drop-in centres and even on the streets. He dispenses much-needed health care to the 5000 vulnerable and marginalised people, with many at the end of their lives. Dosani says the palliative care team’s visits are not just a check-in, they are building bonds and relationships over time. Dr Simon Colgan states that palliative care is a human right for everybody in Canada, has also set up a similar mobile service.

Who will care for the caregivers?

THE NEW YORK TIMES | Online – 19 January 2017 – According to AARP and the National Alliance of Caregiving, nearly a quarter of caregivers are now millenials, equally likely to be either male or female, with a third providing more than 21 hours of care per week. One third of them hold full-time jobs, while a quarter work part-time. This volunteer army is put at great financial risk, even worse, perhaps, is the physical and emotional toll of extended caregiving. For many, caring for a loved one provides tremendous purpose and fulfilment, deepening relationships, then it seems that the goal should not be to reduce family caregiving but to reduce its burdens.

Lawmakers should support improving palliative care access

MINNESOTA | The Mankato Free Press – 15 January 2017 – The American Cancer Society Cancer Action Network in Minnesota is working on legislation to establish a state advisory committee to identify barriers preventing access to PC. The panel’s mission would be to help lawmakers identify gaps in health systems, consumer education, workforce development and promote solutions. Making sure Minnesotans have access to such a complete form of care is a cause every lawmaker should be able to support.

Barry Ashpole Media Watch #495

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

International news:

Mobile team offers comfort care to homeless at life’s end

WASHINGTON STATE | Kaiser Health News – 12 January 2017 – The pilot project run, by Seattle/King County Health Care for Homeless Network and UW Medicine’s Harboview Medical Center, is the first U.S. program that sends mobile teams to provide palliative care to homeless people facing terminal illness. The team connects clients with medical care, paid for through Medicaid or hospital charity, and then makes sure they follow up. They help patients evaluate complicated treatment options, and, when the time comes, they may be with them when they die.So far, for patients enrolled in the program for six months, the Seattle project has reduced hospital stays by 25 percent and emergency room visits by half, according to a June report.

 Specialist publications:

Patient versus health care provider perspectives on spirituality and spiritual care: the potential to miss the moment

ANNALS OF PALLIATIVE MEDICINE | Online – Accessed 1 March 2017 – Spiritual care is well recognized as an important component of patient care particularly for those with advanced illness. To provide such care, however, it is important that we understand both patient and Health Care Professional (HCP) perspectives on spirituality and spiritual distress and how these perspectives both align and differ. This study was originally designed to develop a screening question to allow ready identification of spiritual distress by front line HCP’s but what emerged instead, was a number of important areas of concordance and discordance in how patients and HCP’s viewed both spirituality and the care of spiritual distress. This  study strongly reinforces the need to listen openly, being guided by the patient, to allow them to explore what is important to them, which in turn may help to alleviate their spiritual distress.

Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people

BMC PALLIATIVE CARE | Online – 13 January 2017 – Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning(ACP) discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community. This study also highlights that ACP programs for community-dwelling older people(OP) and offspring/caregivers requires accommodation of OP’s variable and often fluctuating cognitive capacities and competency spectrums. Specific concerns in ACP may arise when OP enter the capacity ‘grey zone’, with fluctuating yet overall declining cognition and executive functioning (reasoning and understanding decisional consequences), and increasing frailty. Educational interventions such as written memory aids may be needed to help these vulnerable OP to better understand the value of ACP and future planning.

Treatment targeted at underlying disease versus palliative care in terminally ill patients: a systematic review

BMJ OPEN | Online – 6 January 2017 – The most concerning decision for patients and families alike following diagnosis of terminal illness relates to the choice of medical strategy of either opting for active treatment targeted at underlying disease (TTD) which can potentially be life-prolonging or curative, versus palliative care (PC) where the primary focus is on providing symptomatic relief and improving quality of life (QOL). The US Medicare regulations recommend PC for patients with terminal illness, ideally in hospice setting, if the expected survival is <6 months; conversely, PC or referral to hospice is considered inappropriate if expected survival is <6 months. However, findings from several studies show that around 40% of patients with advanced lung cancer continued aggressive therapy through the final month of life and over 60% of patients with cancer receive aggressive TTD within the past 3 months of life.

After the DNR: Surrogates who persist in requesting cardiopulmonary resuscitation

THE HASTINGS REPORT | Online – 11 January 2017 – At some hospitals, the procedures are articulated in policies about life-sustaining treatment. Sometimes called unilateral do-not-resuscitate (DNR) policies, these guidelines have been the subject of debate among experts and professional associations connected to questions about medical futility, resource allocation, and patient autonomy. The nineteen cases studied, suggest that although the majority of surrogates will eventually accept a decision not to offer CPR, there are some surrogates who will persist in their request for CPR that medical providers consider inappropriate.

Poverty reduction in India through palliative care: A pilot project

INDIAN JOURNAL OF PALLIATIVE CARE, 2017;23(1):41-45. This article concerns a study by the UK NGO EMMS International and Indian NGO Emmanuel Hospital Association(EHA), to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare – a pilot project.

Barry Ashpole Media Watch #494

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

International news:

Hospice care linked to higher family satisfaction

REUTERS | Online – 4 January 2017 – A recent study suggests that families of terminally ill cancer patients may be more satisfied with the end-of-life treatment their loved ones receive when it involves hospice care. Study co-author Dr Alexi Wright added that their findings suggest earlier hospice enrollment is associated with better symptom management, less pain, better quality of care and higher likelihood that patients will receive the care they want in their own environment.

Specialist Publications:

Palliative care exposure in internal medicine residency education : A survey of [the U.S.] Accreditation Council for Graduate Medical Education internal medicine program directors

AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 5 January 2017 – Training for palliative care physicians is currently inadequate to meet the current palliative care needs as the baby boomer generation ages. Nonspecialty-trained physicians will need to supplement the gap between supple and demand, yet no uniform guidelines exist for the training of internal medicine residents in palliative care. However, there has not been any systematic study performed to evaluate how internal medicine residencies currently integrate palliative care into their training.

Barry Ashpole Media Watch #493

Barry Ashpole Media Watch

International News:

Deaf and dying: How a volunteer team brings palliative care comfort through communication

ONTARIO | The Ottawa Citizen – 25 December 2016 – Monica Elaine Campbell had with palliative care was to help a woman who lost her ability to speak to throat cancer. This experience got Campbell thinking about the communication needs of people who are deaf and hard of hearing like herself. Conversations on experiences on death and dying led Campbell and her friend, sign language interpreter Christine Wilson, to start up the Ottawa Deaf Palliative Care Team, a group of volunteers who provide end-of-life care care for the deaf and hard of hearing and their families. Since 2009, the team has helped inform and console the deaf and hard of hearing, breaking though their sense of isolation at the mist frightening and challenging time of their lives.

All he wants is to die in his native Cuba

INDIANA | The Indianapolis Star – 27 December 2016 – Since Lazaro Blanco Garcia arrived at Key West, Florida in 1980, he has not returned to his native Cuba for these 37 years. When told the prostate cancer he had been suffering from for the past 11 years could not be treated anymore, his final wish was to go home to Cuba. His doctor, Pablo Bedano, said “from a palliative treatment standpoint, I’m sure that they will be able to provide just as good care there as they would here.” Majority of Garcia’s treatment will consist of pain control and end-of-life care and no more of futile cancer treatments that could weaken him.

Specialist publications:

Ensuring quality in online palliative care resources

CANCERS | Online – 13 December 2016 – Evidence and information is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels and clinicians, patients, community members and decision makers are able to find out more about palliative care and end-of-life care. Although research driven improvements in prevention and treatment have improved mortality rates within cancer, disease progression means that many patients will still have palliative care needs. Being able to access high quality palliative care resources is an essential part of integrated cancer care.

Rural long-term care nurses’ knowledge of palliative care

ONLINE JOURNAL OF RURAL NURSING & HEALTH CARE, 2016;16(2):141-167.  The purpose of this study was to examine rural nurses’ knowledge of palliative care for end of life patients in long term care facilities. Although the study sample scored below 50%, registered nurses were more knowledgeable than licensed practical nurses on many of the items on the Palliative Care Knowledge Test. This study supports that the total years practiced in long term care does not affect the knowledge on the Palliative Care Knowledge Test.  Nurses cannot practice what they do not know. Nurses who lack knowledge about the philosophy and principles of palliative care may lower the quality of end of life care for patients in long term care facilities. An evaluation of the knowledge level of nurses for palliative care is an important first step in instituting an educational intervention.

Cracking open death: Death conversations in primary care

JOURNAL OF PRIMARY HEALTH CARE | Online – 21 December 2016 – General practice in New Zealand has suffered encroachments on the traditional cradle-to-grave model of care over the last two decades, with steadily diminishing involvement in the beginnings and endings of life. Yet general practitioners (GPs), particularly GPs working in small and rural areas, remain grounded in the communities they serve, attuned to the flux of their patients’ life course. They are well placed to engage with sensitive issues such as death, based on the foundation of relationships built on trust that have developed over time.  The ease of death conversations may be facilitated by taking a family-centred approach, using community organisations and settings, and harnessing conversation entry points provided by the media.

Advances in Hospice and Palliative Care in Japan: A Review Paper

Supported by national policies, palliative care in Japan has developed essentially in the oncology field. This review summarizes updates from two previous reviews, and focuses on major palliative care settings, specialty, national associations, education, and research on palliative care in Japan. Palliative care in Japan has rapidly progressed in clinical, academic, educational, and administrative areas, especially since the Cancer Control Act. However, Japan has many challenges to advancing palliative care further. Clinically, Japan needs to develop a structure for palliative care in the community, and strategies to integrate palliative care not only with oncology earlier in the disease trajectory, but also with non-cancer disciplines such as cardiology, pulmonology, neurology, nephrology, internal medicine, and critical care.

Barry Ashpole Media Watch #492

Barry Ashpole Media Watch

Specialist Publications:

The influence of palliative care consultation on health-care resource utilization during the last two months of life: Report from an integrated palliative care program and review of the literature

AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 17 December 2016 – This study was conducted to test the hypothesis that palliative care consultation (PCC) was associated with reduced health care resource utilisation for individuals approaching end of life. 102 consecutive deaths of veterans were taken into consideration, of which PCC was associated with lower number of ICU days during the last two months of life. Frequency of ED visits, acute care hospitalisations, number of ICU and hospital days were significantly less for 96 veterans with PCC, as compared to before.

A personal journey in Taiwan’s hospice palliative care movement

BAOJ PALLIATIVE MEDICINE | Online – Accessed 8 February 2017 – Hospice palliative care started in Taiwan in 1990, with foundations of different religious backgrounds and associations with different medical backgrounds joining in to promote. This was followed by Hospice Palliative Care Act (a Natural Death Act) enacted in 2000 and Patient Self-Determination Act passed in 2016. A Taiwan Coma Scale was also proposed for shortening of terminal suffering. At present, Taiwan has 57 hospice wards, 93 hospitals providing hospice home care, 141 hospitals providing hospice combined care and 155 hospitals providing community hospice care.

Empathy, sympathy and compassion in healthcare: Is there a problem? Is there a difference? Does it matter?

JOURNAL OF THE ROYAL SOCIETY OF MEDICINE, 2016;109(12):446-452. Empathy, sympathy and compassion are defined and conceptualised in different ways and they are used interchangeably in research reports and in everyday speech.They are also similar to other forms of pro-social behaviour such as generosity, kindness and patient-centredness. This paper argues that a broad concept of empathy, which combines affective, cognitive, behavioural and moral dimensions, is a more relevant and useful construct for clinical practice, medical research and education.

Literature review of best health and social care practices for individuals with intellectual disabilities encountering the end of life

NURSING & PALLIATIVE CARE, 2016;1(5);118-123. This Literature Review (LR) aim to identify the best care practices for individuals with intellectual disabilities (ID) encountering end of life. Overall findings revealed that there was an absence of policies, procedures and guidelines governing these critical end-of-life care practices, including decision making processes. The LR also indicated inadequate collaborative, inter-agency and multi-professional working. It also noted an absence of theory and universal good practice guidance/framework on dying, death and intellctual disabilities and called for future research to be framed within the human rights approach.

Barry Ashpole Media Watch #491

Barry Ashpole Media Watch

Articles from Asia Pacific Region:

End-of-life care among six human service areas flagged for reform

AUSTRALIA | Australian Ageing Agenda – 7 December 2016 – Australia tasked the Productivity Commission with investigating if the efficiency and effectiveness of the government’s human services could be improved by introducing greater competition and user choice. End-of-life care is one of the six priority areas which have been identified as best suited to deliver improved outcomes in a more competitive environment. The commission also said preferences could be better satisfied and outcomes improved if people nearing end of life were provided with more choice about the timing and setting of end-of-life care.

Specialist Publications

Embedding a palliative approach in nursing care delivery: An integrated knowledge synthesis

ADVANCES IN NURSING SCIENCE | Online – 6 December 2016 – A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have lifelimiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration.

How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA)

BMC MEDICINE | Online – 9 December 2016 – Clinicians can confidently refer to volunteer services at the end of life (EOL). More hours or increased frequency of contact with a volunteer has a statistically significant effect on the rate of decline of physical quality of life… Other measured outcomes of the volunteer provided support showed no statistically significant benefit over usual care, although a trend in favour of the intervention can be seen. This is the first trial of volunteer provided support in the last year of life and provides an emergent answer to questions of whether volunteer support should be used at the EOL to evaluate the effectiveness of such interventions.

Barry Ashpole Media Watch #490

Barry Ashpole Media Watch

Conversations with sick people have always been difficult. Read what not to say to a cancer patient! When is a patient sick, and when is a patient dying? Find out more in this issue of Media Watch! Also in this issue, read about the status of a public health approach to palliative care at New Zealand hospices. 

Articles from Asia Pacific Region:

What not to say to a cancer patient

THE NEW YORK TIMES | Online – 28 November 2016 – A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing.

The status of a public health approach to palliative care at New Zealand hospices

PROGRESS IN PALLIATIVE CARE | Online – 1 December 2016 – There is growing international support for a public health approach to palliative care (PC); however, the status of the movement in the New Zealand context is unknown. Analysis of the quantitative results [of this mixed method study] confirmed that a public health approach to PC was a current priority at 60% of New Zealand hospices. However, both phases of the study demonstrated that community engagement, one of the chief out-workings of a public health approach to PC, was incompletely understood and practised. Furthermore, the qualitative results showed that, while this approach is supported, there are significant barriers to implementation, including paternalism, resource constraints, adequate evaluation, and incomplete understanding of key concepts, such as social networking and community engagement. This study is the first to explore the extent to which a public health approach to PC is supported by hospices in New Zealand. The unique new findings show that there is need for the model to be recognized in policy. Related to practice, if the model is to be implemented to maximum benefit, further conceptual clarity of the key tenets is needed. In addition, addressing the barriers to implementation identified by this study will need to be prioritized by hospice leadership.

Specialist Publications

The dying role: Its relevance to improved patient care

PSYCHIATRY, 2016;79(3):199-205. Society is failing to meet the obligation it has to its dying members. Persons with terminal illness suffer isolation and neglect in hospitals, receive overzealous treatment by physicians, and are kept in ignorance of their situation by families and medical personal. Evidence for these statements has come from observers of the medical care system and from dying patients themselves… In the nineteenth century it was common for persons to die in the familiar environs of their homes, surrounded by grieving families from whom they parted in a meaningful manner… Dying persons today no longer fill a well-defined social role. Instead, the distinction between the roles of sick and dying persons has been lost and, in the resulting confusion, the care of dying people has suffered. The purpose of this article is to clarify the distinction between the dying and sick roles, identify the signs of existing role confusion, suggest ways in which this confusion may be corrected, and show how re-establishment of the dying role can result in improved care for dying people. The important part physicians play in defining sick and dying roles is emphasized.

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

Barry Ashpole Media Watch #489 (Part 2 of 2)

Barry Ashpole Media Watch

Read about application of palliative care principles in advanced Parkinson’s disease, how to measure compassion in healthcare, and provision of palliative care across borders in this issue of Media Watch today!

Specialist Publications

The application of palliative care principles in advanced Parkinson’s disease

ADVANCES IN PARKINSON’S DISEASE | Online – 22 November 2016 – Palliative care (PC) has great potential to improve the quality of life of patients with advanced Parkinson’s disease. However, neurologists face multiple barriers in practically applying the concepts of PC including a deficit in education and limitations in time to coordinate this care. In this review, the authors discuss practical ways for neurologists to apply the principles of PC in several domains, including exercising symptom management, managing polypharmacy, managing advanced care planning, supporting patient and families in their psychosocial and spiritual needs, identifying caregiver burden, utilizing multidisciplinary care, and understanding the role of hospice referral.


Measuring compassion in healthcare: A comprehensive and critical review

THE PATIENT | Online – 19 November 2016 – Included were studies containing information on the Compassion Competence Scale, a self-report instrument that measures compassion competence among Korean nurses; the Compassion Scale, the Compassionate Care Assessment Tool, and the Schwartz Center Compassionate Care Scale, patient-reported instruments that measure the importance of healthcare provider compassion; the Compassion Practices Scale, an instrument that measures organisational support for compassionate care; and, instruments that measure compassion in educational institutions (instructional quality and a Geriatric Attitudes Scale). Each is associated with significant limitations. Most only measure certain aspects of compassion and lack evidence of adaptability to diverse practice settings. The Evaluating Measures of Patient-Reported Outcomes of self-report instruments revealed a lack of psychometric information on measurement reliability, validity, responsiveness and interpretability, respondent, administrative and scoring burden, and use in sub-populations.

Building bridges: Palliative care beyond borders

PROGRESS IN PALLIATIVE CARE | Online – 14 November 2016 – Globalization allows patients, including those with a life-limiting disease, such as cancer, to seek medical advice and second opinions beyond their own countries’ borders, in search for available curative treatments. The increased travel opportunities and a broader access to communication technologies foster patients’ mobility, even in a palliative care (PC) setting. Our patient travelled all the way to Europe from Mongolia to seek a second opinion on available treatments for her relapsing end-stage cervical cancer. Best supportive care as proposed by the Mongolian colleagues was confirmed after a chemotherapeutic trial, leading to the patient’s request for a rapid repatriation. The purpose of this case report is to identify the various factors which may facilitate the care of patients with end-stage disease travelling from foreign countries and to highlight the complexity of a repatriation process for PC recipients.

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET


Barry Ashpole Media Watch #489 (Part 1 of 2)

Barry Ashpole Media Watch

Read about dying patient law in Israel, palliative care in Pakistan and understanding the life course through newspaper obituaries in India at this issue of Media Watch today!

Articles from Asia Pacific Region:

The policy of non-decision: The case of the dying patient law and the vegetative state patients in Israel

ISRAEL | Israel Affairs – 10 November 2016 – Enacted in Israel in 2005, the dying patient law does not apply to vegetative state patients, leaving them with no decision regarding their fate. This article discusses the policy of non-decision using as a case study the treatment and the option of abstaining from treatment of patients who have been classified as “vegetative state” (VS). This analysis was conducted while focusing on the various explanations for adopting a policy of non-decision, and suggests that it is the gap between the national level of policymaking, where a policy of non-decision is adopted, and the local level of policymaking, where concrete decisions are required, that harms those affected both directly and indirectly by the decisions made. With the aim of informing policymakers about their choice, the article explains how a policy of non-decision leads to local medical positions that create a street-level policy, ignoring the shared medical needs of the VS patients as a group. The ramifications of this choice lead to a failure to exhaust all treatment options, or alternately, the impossibility of avoiding treatment of these patients.

Specialist Publications

Understanding the life course through newspaper obituaries

INDIAN JOURNAL OF GERONTOLOGY, 2016;30(4):452-462. Contrary to the commonly held belief that death is hidden from public view, obituary announcements remain the most dominant channels of presentation in the mass media. Obituaries as part of the mourning process truly present life in death. They go beyond a simple announcement of death to include information about the socio-economic status of the deceased and/or his survivors. Obituary announcements represent an alternative data source on a people’s perceptions of life, death and dying, and derive their meanings from the socio-cultural codes of traditions, beliefs, religions and such other practices. Their presentations cover achievements from birth till death, the inevitability of death and the beliefs about the continuity of life after death. However, the practice of not to speak ill of the dead (which is prevalent in many cultures) presents a major limitation to the effective utilization of the data source in cultural analysis. This is evident in this study as no single obituary announcement detailed any wrong doing of the deceased. Nevertheless the authors findings have helped to understand that obituaries can be a useful tool for tracking societal norms and values in the face of rapid societal transformation.

Palliative care in Pakistan

INDIAN JOURNAL OF MEDICAL ETHICS | Online – 18 November 2016 – Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care (PC) from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient’s pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan, but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for PC is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate PC services. This article seeks to trace the social and cultural perspectives in Pakistan with regards to accessing PC in the context of healthcare facilities available.

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET


Barry Ashpole Media Watch #488

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

Articles from Asia Pacific Region:

Giving sick children dignity in death

Giving sick children dignity in death CHINA | The China Daily (Beijing) – 16 November 2016 – Zhou Xuan, an oncologist at the Beijing Children’s Hospital, clearly remembers seeing a dying boy pressing his face against the window beside his bed. “He was about 2, and had acute myeloid leukemia. For most of the four months he stayed on the ward, he longed to go outside and play, a request repeatedly turned down by his mother who was worried about his physical condition,” she said. “Weeks later, I came across the boy’s mother at the hospital. She was traumatized by his death, and by the fact that she had refused his ‘one last wish.’” Zhou said. “Sadly, regrets are common among parents, who are focused too single-mindedly on seeking a cure for their dying child.” She said the success of children’s palliative care (PC) in China will depend on whether parents can accept that the process is not about “giving up,” but about “making peace with oneself while having a dignified, less-painful exit from life’s stage. In the West, this is done by specially trained teams of doctors, nurses and social workers who work together with a patient’s doctors to weave an extra layer of support for the patients and their families. In China now, my team of doctors and nurses have to undertake dual roles.” Strangely, this arrangement may better suit the current situation…

Experiences of healthcare professionals in providing palliative end-of-life care to patients in emergency departments: a systematic review protocol

JBI DATABASE OF SYSTEMATIC REVIEWS & IMPLEMENTATION REPORTS, 2016;14(10):9-14. The emergency department (ED) is increasingly recognized as a potential site to provide palliative care (PC) to patients at their end of life. Although the true incidence of patients with these health needs in ED remains unknown, it is expected to increase over time as the population ages. As such, all healthcare professionals working in the ED are likely to be expected to provide this care. However, such provision of care in the ED setting is not without concerns. The practice in emergency care is characterized by managing acute health problems, making critical decisions under pressure and with limited time to discuss treatment plans and preferences with patients and their families. This ED culture may not be conducive to providing quality PC. Indeed, healthcare professionals report mixed feelings about providing this type of care in the ED setting. Given that the provision of PC is increasing and that it has significant implications for the practice and wellbeing of healthcare professionals working in the ED, understanding the caring experience from their perspectives will add to the body of knowledge in this area.

Specialist Publications

Appropriate and inappropriate care in the last phase of life: An explorative study among patients and relatives

BMC HEALTH SERVICES | Online – 15 November 2016 – This study shows that patients and relatives interpret appropriate care in the last phase of life as a wide-ranging term, which can refer to supportive care, treatment decisions, location, the role of the patient’s wish and patient-physician communication. These findings are in line with earlier studies, that showed that patients in the last phase of life have multiple and diverse care needs. The five dimensions of appropriate care are similar to, but broader than those identified in studies on good palliative care (PC). For instance, the domains described in the ‘National Consensus Project Clinical Practice Guidelines for Quality Palliative Care’1 mostly fall under the dimension “supportive care,” while focusing little on treatment decisions and location. Apparently, patients and relatives perceive appropriate care in the last phase of life as broader than the presence of good quality PC. In many cases, inappropriate care could simply be defined as the absence or the opposite of appropriate care. In these cases, care was insufficient to meet the patients’ and relatives’ needs. However, the difference between appropriate care and inappropriate care was not always so clear-cut. While potentially curative or life-prolonging treatment was often described as inappropriate, there were also cases in which it was seen as appropriate. Accordingly, stopping potentially curative or life-prolonging treatment was described as appropriate as well as inappropriate (albeit less often). This illustrates how difficult decisions on starting, continuing or stopping potentially curative of life-prolonging treatment can be in advanced disease. Treatment can be appropriate by giving hope, a chance of prolonging life and it can be the patient’s wish. But in many cases, treatment is more likely to lead to false expectations, sideeffects and complications.