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.

How to uphold patient dignity at the end of life

This article is from Palliative Matters.

According to Dr Harvey Max Chochinov, international expert in dignity and palliative care, dignity is not just a concept associated with managing bodily functions but also a dying person’s perception of how they are seen by others. For people who are dying, they feel a loss of dignity when focus on their illness or disease leaves them with the sense they have been defined generically as a patient and all they have.

The research also shows significantly higher rates of depression, anxiety and feelings of hopelessness in people experiencing a loss of dignity and healthcare workers have a responsibility in understanding the impact of their interactions with patients.

Read the full article here.

 

 

 

 

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. https://goo.gl/il9BTT

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. https://goo.gl/tIstIG

SHC-LCPC Forum – Deprescribing in Palliative Care

Feb17 SHC-LCPC

 

Abstract Submission for APHC 2017

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Dear Colleagues

The 12th Asia Pacific Hospice Conference (APHC) 2017 will be accepting abstracts for poster and/or oral presentations till 18 February 2017, 23:59 (GMT+8). You may wish to read more on the criteria and submission details here.

We look forward to seeing you at the 12th APHC in July!

APHN – Hospis Malaysia Palliative Care Workshop: Palliative Care Nursing

APHN-Hospis Malaysia Workshop

WORKSHOP OF PALLIATIVE CARE NURSING (18-19 February 2017)

It is crucial that healthcare providers involved in palliative care services possess the necessary skill and knowledge to ensure that holistic patient-centred care is never compromised. Palliative nursing care kick starts our first module of our palliative care workshops every year.

This 2-day workshop addresses topics on patient assessment, wound management, use of syringe driver, communication and the entire spectrum of patient care which is vital towards ensuring patients receive the due care they need in their place of care.

For further information, please contact Wai Mun at 03 – 9133 3936 (ext: 267) or email  education@hospismalaysia.org

‘If you grieve well, you live well’: coming to grips with the death of a parent

This article is originally from PCAeNews.

Louise Blessington received a call late one night, where her dad told her that he was dying from liver cancer. He then passed away six weeks later, after her family got back to Australia.

She found there to be little support for kids who’d lost parents as the teen cancer support group, CanTeen, she joined, had a cut-off age of 24. She then set up the ACT Young People’s Bereavement Network, with just over $1500 from the ACT Government, for people aged between 16 and 30. A formal counselling session with counsellor Mandy Cox, where she talks about the process of getting over loss, makes up the first half of the group meetings.

Mandy said that young people are often reluctant to talk about death but they can feel the loss more deeply. She also pointed out that young people lack role models in the community who talks about loss in an open, honest way. Louise reckons grief is just another part of life and learning how to cope with it makes it easier to move forward.

Read the full article here.