Palliative care is about living, not dying, says expert

This article was  from eHospice.

Palliative care is about living, compassion, dignity and person-centered care, said palliative care physician Dr Jose Pereira. If the “p-word” is introduced only when physicians have given up on attempts to cure or control the disease, the anxiety will only increase. He further pointed out that palliative care and treatment to cure and control go hand in hand as the principles of palliative care can be applied while treatments are underway. In studies where palliative care techniques that are patient-centred are employed, patients have lived almost three months longer with a much better quality of  life, said Pereira.

Palliative care is also often restricted to places such as palliative care units with specialised palliative care physicians and nurses, a model which guarantees limited access. Instead, Pereira added, every cardiologist, oncologist, kidney specialist and family doctor needs to start incorporating palliative care techniques into their treatment. He noted that Canada’s expertise in palliative is among the best in the world, but only 30% of Canadians have access to it.

Read the full article here.

Walking and talking helps bereaved to process grief

This article was originally from Palliative Matters.

For people grieving the loss of a loved one, a simple program that enables them to walk and talk with trained volunteers is making a difference. Ms Sandy Muir, support officer (grief and loss) with Hospice Volunteers South Tasmania, said about 12 volunteers are trained to conduct the fortnightly walks and up to four generally attend. Over time, participants build trust and connections both with volunteers and fellow walkers, enabling them to share personal experiences. Since the program started in 2006, nearly 100 bereaved people have walked regularly with the group. It has helped some of them to find new friends and be supported by people in similar circumstances. Ms Muir said being out in the fresh open air makes it a relaxed environment for people to chat about feelings and experiences. She believes doing something physical suits some people who may be less inclined to open up when sitting face to face.

Read the full article here.

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.” https://goo.gl/6X8bjD

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. https://goo.gl/WBBmeE

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. https://goo.gl/sJ0NfA

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. https://goo.gl/4OaCnv

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. https://goo.gl/lVhk0z

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). https://goo.gl/Yxb8uB

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. https://goo.gl/rrqQDj

SHC-LCPC Forum – Innovation comes from re-thinking

Mar17 SHC-LCPC

APHN-Hospis Malaysia Palliative Care Workshops: Clinical Ethics In Palliative Care

APHN-Hospis Malaysia Workshop

WORKSHOP ON CLINICAL ETHICS IN PALLIATIVE CARE (01-02 APRIL 2017)

Much of the issues involved in medical ethics revolve around the issue of illness and the preservation of life. As Palliative Care deals with patients and families at the transitions of care, issues surrounding medical ethics become more common. There is increasing public discussion in areas such as withholding and withdrawal of treatment, mental capacity, medical futility and physician assisted suicide and euthanasia. Those involved in palliative care should be aware of both ethical issues as well as the clinical evidence that should guide their practice. This workshop deals with many of the ethical issues in palliative care mainly through case discussions.

For further enquiries, kindly contact Wai Mun via telephone: +61-03 9133 3936 (extension 267) or email  education@hospismalaysia.org

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. https://goo.gl/xn8gzc

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. https://goo.gl/leNlrx

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. https://goo.gl/8z3Ztu

When the small things become extraordinarily important

This post was originally from CareSearch.

Although functional decline is inevitable at the end-of-life, or when someone has an incurable disease or motor-neuron disease, the drive for these people to stay independent increases instead. The occupational theraphist (OT) then has to key roles to play – optimise a person’s independence and participation as function declines and support active participation in everyday activities.

OTs work to optimise and support people with advanced diseases to stay in their preferred place of care and assessing their capacities to manage at home. Effective management of symptoms, such as breathlessness, pain and fatigue, also allows people to remain at home for as long as possible and participate in values activities. Although the OT’s intentions to optimise function may be supportive, interventions are often a stark reminder to a person that they are dying.

However, as the diseases progress, partial independence with simple self-care activities can be tough and sometimes, clinicians and carers want to take over to help and minimise distress. Therefore, the OT needs to continually check in to clarify when a person wants assistance with a task, as trying and not managing is an important part of adjusting to functional decline.

Testing out these functional limits is incredibly challenging and requires constant readjustment and is hard work, physically and emotionally. However, to deny a person this opportunity is to remove space and time to process what is happening, which is work of simultaneously living and dying. The role of the occupational therapist in palliative care is to work with each person to envision what is possible in the future that remains, then practically enable participation in this time limited but invaluable future, and together hold what this brings forwards.

Read the full article here.

 

Families in Crisis

This article originally appeared on eHospice.

Family doctors play a crucial role in supporting patients and families through life events, including death and bereavement, even without specialist training in palliative care. Many patients in India do not access primary care, due to the differences between states in economic resources and availability of health care workers. This has a detrimental effect on health outcomes and meant that patients and families living with terminal illness usually lack the support of their family doctor.

The palliative care teams are unable to treat every family member as their own patient as their resources are stretched. Suicide is a consequence of the huge strain families are under because of chronic or terminal illness. In India, 25% of documented are as a result of family problems and another 20% due to illness. The author suggests that for the current situation in India to improve, there needs to be better access to essential pain medications and implementation of government pain management and palliative care policies.

Read the full article here.

APHN Bursary for APHC 2017

logo2Asia Pacific Hospice Palliative Care Network Bursary for Asia Pacific Hospice Conference 2017

Dear APHN members

Greetings to you all!

The APHN will be offering 4 bursaries for members to attend the 12th Asia Pacific Hospice Conference in Singapore on 26th April to 29th July 2017.

Each successful applicant will receive support of up to SGD 1,100 which is meant to help the cost of the conference registration, travel and accommodation.

Eligibility Criteria

  • Must be a current individual member of APHN
  • Application is supported by 2 other APHN members
  • Must have an accepted abstract for the APHC
  • Must submit a report on the benefits of attendance within 3 months after attending APHC

Preference will be given to applicants who

    • Work in a palliative care service
    • Are from developing countries
    • Have not received sponsorship for attending regional and international palliative care conferences

Applications must be submitted online here by the application deadline 31 March 2017.

The successful applicant will be notified by email. The disbursement of monies by the APHN Secretariat will be on a reimbursement basis on receipt of original receipts and/or invoices.

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. https://goo.gl/s2fTKp

 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. https://goo.gl/CNpp7d

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. https://goo.gl/J0hI3U

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. https://goo.gl/OmKdPx

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. https://goo.gl/4CyvmX

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. https://goo.gl/HFAUtd

LCPC-APHC-SHC Workshops 2017

LCPC-APHC-SHC Workshop 2017 - A Holistic Assessment of PatientsLCPC-APHC-SHC Workshop 2017 - The Role of a Pharmacist in Palliative Care

Dear colleagues

LCPC will be hosting two conference workshops during the APHC 2017 in July. Registrations are opened now!

33rd SHC-LCPC Postgraduate Course in Palliative Medicine

33 SHC-LCPCThe SHC-LCPC postgraduate course in palliative care is back this year!

Taking place on 26-28 April 2017, this 3-day foundation course is designed for doctors across all settings and covers basic principles and practices of palliative medicine. Read more about this course here. Registration opens today and will end 5 April 2017.