more_vertHow did it happen that palliative care lost the dignity debate? Palliative care is a discipline dedicated to improving quality of life by preventing and alleviating suffering. There can be few higher callings in medicine. Yet those who advocate “dignity in dying” have successfully claimed that the idea of dignity lies not in palliative care but in assisted dying for the terminally ill. A large majority of the public seems to agree. Those in favour of assisted dying have portrayed palliative care as somehow antithetical to patient autonomy.
Preference: Palliative Care
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Diagnosing death: not as easy as you might think
A new Viewpoint in the New England Journal of Medicine this week looks at the thorny question of how we distinguish the living from the dead. As the author, bioethicist Dr Robert Truog, points out, being able to clearly make this distinction is an essential function of any society, determining who can be buried, whose wills can be executed, when people can be taken off a ventilator or when their organs can be donated. At first blush, the question of knowing whether someone is alive or dead may seem relatively straightforward – but there’s a surprising amount of disagreement and variation around how death is actually defined.
Take the recent case of Jahi McMath, a 13-year-old girl from California. In 2013, after undergoing a complex tonsillectomy, she experienced a massive haemorrhage which left her with severe, irreversible brain damage. Her doctors proclaimed her brain dead and notified a transplant donor organisation. But her parents didn’t agree, and went to court to oblige Jahi’s doctors to keep her on a ventilator. They argued that whatever the state of her brain, Jahi’s still beating heart meant that she was still alive.
Eventually the courts let Jahi’s parents remove her from the hospital, which issued a death certificate. Jahi was moved to New Jersey whose laws prohibit clinicians from declaring death by neurological criteria if this violates the religious beliefs of the patient. The upshot is that Jahi is legally dead in California, and legally living in New Jersey. She is kept biologically alive with a ventilator, feeding tubes and hormone supplementation, and her body continues to develop. Now aged 17, Jahi has passed through puberty since her brain injury.
Jahi’s case is rare, but certainly not unprecedented. She is one of what are known as “beating heart cadavers” – people who, after a devastating brain injury, no longer have any brain function, although their hearts can be kept beating with medical intervention. Some of these beating heart cadavers can live on for months or years or, in one case, for two decades.
In most jurisdictions, beating heart cadavers are considered dead for legal purposes. But definitions of brain death vary from country to country and, as can be seen in the Jahi McMath case, even from state to state within a country.
In the UK, for instance, brain death can be declared when there is no activity in the brain stem, even though there could still be activity in the cortex. We are stricter in Australia, where brain death can only be declared when the whole brain is dead. But Australian law leaves it up to the doctors to determine “the creation and prescription of techniques of diagnosis” of death, without further defining how that may be done.
This vagueness has led to controversy in the past. In 2013, Melbourne-based bioethicist Professor Nicholas Tonti-Filippini claimed that patients in ICU were being declared brain dead and having their organs harvested even though they had not been properly found to be brain dead.
“They are diagnosing brain death while there is still some midbrain function. They say. ‘So what?’, because the person is not conscious.” he told Fairfax Media.
But the claims were strongly denied by the Australian and New Zealand Intensive Care Society, which claimed its brain death criteria were “an exemplar of rigour”.
Dr Truog, in his Viewpoint, says the problem with definitions of death stems at least in part from a variance in the way things are defined legally and biologically. Legal definitions are typically defined by “bright lines”, whereas biology tends to be continuous. He gives the example of how people acquire a completely new legal status in society on their 18th birthday, despite the fact that they are biologically and psychologically barely any different from the day before.
Death, he suggests, may be like that. There may be a legal point at which one is dead, but death itself exists on a continuous biological spectrum. There may be some people who have barely any more brain function than Jahi McMath, but who are considered by most jurisdictions as alive. And these patients may be able to live for many years.
The legal definition of death, like so many other legal definitions, is a social construction, Dr Truog says, “based on biological reality but not completely defined by it.”
Jahi McMath’s case remains relatively rare, which prompts Dr Truog to wonder why there aren’t more cases like her. The answer, he says, is that diagnosis of brain death acts as a self-fulfilling prophecy.
“In almost all cases, the diagnosis of brain death is quickly followed by removal of the ventilator or by organ donation, which invariably leads to cardiorespiratory death,” he writes.
You can access the full Viewpoint here.
Will you still love me when I’m 84 (or 94)?
BY PROFESSOR STEPHEN LEEDER, EMERITUS PROFESSOR PUBLIC HEALTH, UNIVERSITY OF SYDNEY
One Saturday morning 10 years ago, I took a phone call from the nursing home where an elderly, moderately demented relative resided. The facility was humane, professional, warm and near our home. “We’re calling to let you know that we are about to send her to hospital.” This was unexpected. What was the problem? “She keeps holding her head to one side.” Had they considered calling her GP? “He’s not available on the weekend.” So I visited.
She was, indeed, holding her head at a strange angle, but happily wolfing down her lunch. “Can you straighten your neck?” I asked, demonstrating. She smiled and complied.
What it was all about I have no idea. But I felt pleased to have avoided her admission – ambulance, ED, unfamiliar ward, disorientation, perhaps a fall (with or without fracture), a week or 10 days in an alien place, perhaps an infection?
(Lest you imagine that I am dissing the GP, I’m not. He and his partner provided exemplary palliative care in her final days eight years later and high-quality service for the years in between. It’s the system that sucks.)
Recently, the AMA has made an extensive submission to the Aged Care Taskforce concerning residential aged care facilities.
This document derives largely from the practical experience of doctors doing their best – within the logistic constraints of workload and organisation – to provide care for older people. The AMA’s executive summary states:
An Aged Care Commission should be introduced to streamline the aged care system, and should include a role that ensures there is an adequate supply of appropriate, well-trained staff to meet the demand of holistic care to a multicultural, ageing population, and also to ensure the aged care workforce has clear roles and responsibilities.
A Commission, if ever it happens, is an aspiration. Right now, staffing of residential aged care facilities is a disgrace. From the submission: “Our members have reported cases where nurses are being replaced by junior personal care attendants, and some residential aged care facilities do not have any nurses staffed after hours.”
The AMA illustrates the worsening problem.
Between 2003 and 2016, personal care attendants have risen from 55 per cent to 72 per cent of this full-time workforce. Registered nurses have decreased from 22 per cent to 15 per cent. Other skilled workers have declined proportionately. Nurse practitioners, a great asset in this context (based on overseas experience in systems such as Geisinger Health https://www.geisinger.org/about-geisinger) make up a tiny fraction of the workforce, as do allied heath professionals.
We are progressively accepting the need for integrated care between hospitals and the community for multi-morbid, frail patients. The crucial role, in this effort, of GPs and nurse coordinators is coming to be understood, and to some extent, resourced. This redeployment of staff and effort is no small deal – much change to be managed. In the light of this move, now is the time to take account afresh of what is needed to re-fit aged care facilities to participate more fully in providing integrated care.
The AMA document also explores the context within which residential aged care is provided. It points out that, in 2013, 32 per cent of the Australian population (5.8 million people) were born overseas. “This presents a major challenge in the form of incorporating different cultures into aged care, and communication with individuals [including families] who may have low levels of English literacy.” But this observation weakens when you consider the 2016 census figures that show that the percentage of the population not speaking English at home is only around 21 per cent.
Care for older Aboriginal and Torres Strait Islander people is another cultural challenge we have done little to accept.
The submission concludes by re-stating the centrality of workforce – adequate education, adequate funding, and adequate numbers. This is the problem demanding immediate attention.
Pilot to look at home based palliative care
Taxpayers will fund a trial to provide palliative care services aimed at delivering the right care at the right time while also aiming to reduce hospitalisations.
The $8.3 million pilot program will support people nearing the end of their lives so they can receive better care and treatment at home.
The Greater Choice for At Home Palliative Care program will use the government money to roll out in ten locations around Australia.
The program looks at coordinating patient supported services including: local GP treatment, palliative, hospital and specialist care support, and community and social services.
People will receive the right care at home, tailored to their own need, which will hopefully mean less trips to the hospital to access these services.
Australians who are coming to the end of their life deserve to have the best care possible.
The program will be administered through Primary Health Networks (PHNs) across Australia, and will be coordinated with local and state services, as well as aged care providers.
The ten PHNs which will take part in the trial include: Brisbane South; Central QLD, Wide Bay and Sunshine Coast; Gold Coast; South Western Sydney; Murrumbidgee; Western NSW; North Western Melbourne; Eastern Melbourne; Adelaide, and Country WA.
The trial runs until June 2020 and interested people and their families, in the trial areas, should contact their GP to discuss joining the program.
Palliative Care Australia estimates that as many as 120,000 Australians may need to access palliative care each year.
MEREDITH HORNE
Additional research funding for rare cancers
The Federal Government has announced a $69 million boost to help medical researchers in their fight against rare cancers and rare diseases.
The funding is aimed at assisting patients who often have few options and poor life expectancy.
Health Minister Greg Hunt said the Government was committed to investing in research to find the answers to these challenges.
“This is a significant boost on the $13 million that was originally flagged when we called for applications and reflects the incredibly high calibre of medical research that is happening right here in Australia,” Mr Hunt said.
The new funding includes more than $26 million for 19 research projects as part of the landmark Medical Research Future Fund’s Rare Cancers, Rare Diseases and Unmet Needs Clinical Trials Program.
These projects will undertake clinical trials for devastating conditions like acute lymphoblastic leukaemia in infants, aplastic anaemia, multiple sclerosis and Huntington’s disease.
Researchers at the University of New South Wales will test a vaccine to target glioblastoma, a lethal brain cancer and the most frequent cause of cancer deaths in children and young people.
Another clinical trial at the University of Queensland will evaluate the benefits of medicinal cannabis for people with advanced cancer, and define the role of the drug for patients with cancer in palliative care.
Monash University is researching a new preventive treatment for graft versus host disease following a bone marrow transplant which could halve instances of the life-threatening complication, while a trial by the University of Western Australia to simultaneously compare a range of cystic fibrosis treatments may lead to improved care for this complex disease.
Other trials will explore the effectiveness and safety of aspirin compared to heparin to treat blood clots and test a new triple therapy regimen to target rare viral-driven brain lymphomas.
Prior to this announcement, rare and less common cancers received 12 per cent of the cancer research dollar, despite accounting for over 50 per cent of cancer deaths.
Details of the rare cancer projects that have received funding can be found here: www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2018-hunt008.htm
MEREDITH HORNE
AMA shines in Australia Day Honours
Former Australian Medical Association President Dr Mukesh Haikerwal has been awarded the highest honour in this year’s Australia Day awards by being named a Companion of the Order of Australia (AC).
He is accompanied by the current Editor-in-Chief of the Medical Journal of Australia, Laureate Professor Nick Talley, as well as longstanding member Professor Jeffrey Rosenfeld – who both also received the AC.
The trio top a long and impressive list of AMA members to receive Australia Day Honours this year.
AMA Federal Councillor, Associate Professor Julian Rait, received the Medal of the Order (OAM).
A host of other members honoured in the awards are listed below.
AMA President Dr Michael Gannon said the accolades were all well-deserved and made he made special mention of those receiving the highest Australia Day Honours.
“They have dedicated their lives and careers to helping others through their various roles as clinicians, researchers, teachers, authors, administrators, or government advisers – and importantly as leaders in their local communities,” Dr Gannon said.
“On behalf of the AMA, I pay tribute to all the doctors and other health professionals who were honoured today for their passion for their profession and their dedication to their patients and their communities.
“The great thing about the Honours is that they acknowledge achievement at the international, national, and local level, and they recognise excellence across all avenues of human endeavour.
“Doctors from many diverse backgrounds have been recognised and honoured again this year.
“There are pioneering surgeons and researchers, legends across many specialties, public health advocates, researchers, administrators, teachers, and GPs and family doctors who have devoted their lives to serving their local communities.
“The AMA congratulates all the doctors and other health advocates whose work has been acknowledged.
“We are, of course, especially proud of AMA members who are among the 75 people honoured in the medicine category.”
Dr Haikerwal, who was awarded the Officer in the Order of Australia (AO) in 2011, said this further honour was “truly mind-blowing” and another life-changing moment.
“To be honoured on Australia Day at the highest level in the Order of Australia is beyond imagination, beyond my wildest dreams and extremely humbling,” Dr Haikerwal said.
“For me to be in a position in my life and career to receive such an honour has only been made possible due to the unflinching support and unremitting encouragement of my closest circle, the people who have been with me through every step of endeavour, adversity, achievement, and success.”
CHRIS JOHNSON
AMA MEMBERS IN RECEIPT OF HONOURS
COMPANION (AC) IN THE GENERAL DIVISION
Dr Mukesh Chandra HAIKERWAL AO
Altona North Vic 3025
For eminent service to medical governance, administration, and technology, and to medicine, through leadership roles with a range of organisations, to education and the not-for-profit sector, and to the community of western Melbourne.
Professor Jeffrey Victor ROSENFELD AM
Caulfield North, Vic
For eminent service to medicine, particularly to the discipline of neurosurgery, as an academic and clinician, to medical research and professional organisations, and to the health and welfare of current and former defence force members.
Professor Nicholas Joseph TALLEY
Black Hill, NSW
For eminent service to medical research, and to education in the field of gastroenterology and epidemiology, as an academic, author and administrator at the national and international level, and to health and scientific associations.
OFFICER (AO) IN THE GENERAL DIVISION
Emeritus Professor David John AMES
East Kew, Vic
For distinguished service to psychiatry, particularly in the area of dementia and the mental health of older persons, as an academic, author and practitioner, and as an adviser to professional bodies.
Dr Peggy BROWN
Sanctuary Cove, Qld
For distinguished service to medical administration in the area of mental health through leadership roles at the state and national level, to the discipline of psychiatry, to education, and to health care standards.
Professor Creswell John EASTMAN AM
St Leonards, NSW
For distinguished service to medicine, particularly to the discipline of pathology, through leadership roles, to medical education, and as a contributor to international public health projects.
Professor Suzanne Marie GARLAND
Docklands, Vic
For distinguished service to medicine in the field of clinical microbiology, particularly to infectious diseases in reproductive and neonatal health as a physician, administrator, researcher and author, and to professional medical organisations.
Dr Paul John HEMMING
Queenscliff, Vic
For distinguished service to higher education administration, to medicine through contributions to a range of professional medical associations, and to the community of central Victoria, particularly as a general practitioner.
Professor Anthony David HOLMES
Melbourne, Vic
For distinguished service to medicine, particularly to reconstructive and craniofacial surgery, as a leader, clinician and educator, and to professional medical associations.
Dr Diana Elaine O’HALLORAN
Glenorie, NSW
For distinguished service to medicine in the field of general practice through policy development, health system reform and the establishment of new models of service and care.
MEMBER (AM) IN THE GENERAL DIVISION
Dr Michael Charles BELLEMORE
Croydon, NSW
For significant service to medicine in the field of paediatric orthopaedics as a surgeon, to medical education, and to professional medical societies.
Dr Colin Ross CHILVERS
Launceston, Tas
For significant service to medicine in the field of anaesthesia as a clinician, to medical education in Tasmania, and to professional societies.
Associate Professor Peter HAERTSCH OAM
Breakfast Point, NSW
For significant service to medicine in the field of plastic and reconstructive surgery as a clinician and administrator, and to medical education.
Professor Ian Godfrey HAMMOND
Subiaco, WA
For significant service to medicine in the field of gynaecological oncology as a clinician, to cancer support and palliative care, and to professional groups.
Dr Philip Haywood HOUSE
WA
For significant service to medicine as an ophthalmologist, to eye surgery foundations, and to the international community of Timor Leste.
Adjunct Professor John William KELLY
Vic
For significant service to medicine through the management and treatment of melanoma, as a clinician and administrator, and to education.
Dr Marcus Welby SKINNER
West Hobart, Tas
For significant service to medicine in the field of anaesthesiology and perioperative medicine as a clinician, and to professional societies.
Professor Mark Peter UMSTAD
South Yarra, Vic
For significant service to medicine in the field of obstetrics, particularly complex pregnancies, as a clinician, consultant and academic.
Professor Barbara S WORKMAN
East Hawthorn, Vic
For significant service to geriatric and rehabilitation medicine, as a clinician and academic, and to the provision of aged care services.
MEDAL (OAM) IN THE GENERAL DIVISION
Professor William Robert ADAM PSM
Vic
For service to medical education, particularly to rural health.
Dr Marjorie Winifred CROSS
Bungendore, NSW
For service to medicine, particularly to doctors in rural areas.
Associate Professor Mark Andrew DAVIES
Maroubra, NSW
For service to medicine, particularly to neurosurgery.
Dr David William GREEN
Coombabah, Qld
For service to emergency medicine, and to professional organisations.
Dr Barry Peter HICKEY
Ascot, Qld
For service to thoracic medicine.
Dr Fred Nickolas NASSER
Strathfield, NSW
For service to medicine in the field of cardiology, and to the community.
Dr Ralph Leslie PETERS
New Norfolk, Tas
For service to medicine, and to the community of the Derwent Valley.
Associate Professor Julian Lockhart RAIT
Camberwell, Vic
For service to ophthalmology, and to the development of overseas aid.
Mr James Mohan SAVUNDRA
South Perth, WA
For service to medicine in the fields of plastic and reconstructive surgery.
Dr Chin Huat TAN
Glendalough, WA
For service to the Chinese community of Western Australia.
Dr Karen Susan WAYNE
Toorak, Vic
For service to the community of Victoria through a range of organisations.
Dr Anthony Paul WELDON
Melbourne, Vic
For service to the community, and to paediatric medicine.
PUBLIC SERVICE MEDAL (PSM)
Dr Sharon KELLY
Yeronga, Qld
For outstanding public service to the health sector in Queensland.
Professor Maria CROTTY
Kent Town, SA
For outstanding public service in the rehabilitation sector in South Australia.
[Comment] The global fight against cancer: challenges and opportunities
By 2030, the number of cancer cases is projected to increase to 24·6 million and the number of cancer deaths to 13 million.1 Worldwide, health systems, especially in low-income and middle-income countries (LMICs), are ill prepared to manage the increasing cancer burden.2 Globally, there is a shortfall in coverage of cancer services for prevention, screening, treatment, and palliative care.3–5 If cost-effective interventions for cancer screening, prevention, and treatment were delivered through strengthened health systems, they could help largely avoid many premature deaths, unnecessary suffering, and unacceptable inequalities.
GPs – more accessible than ever
BY DR RICHARD KIDD, CHAIR, AMA COUNCIL OF GENERAL PRACTICE
As a GP who is there for his patients, providing urgent appointments, aged care visits, home visits and palliative care, I am fed up with the claims being perpetuated by those pursuing their own agendas under the guise of improving access to health care. Time and time again, we hear that GPs are over-burdened and inaccessible. This is used to argue the case for expanded scopes of practice and healthcare models that fly in the face of medical evidence.
A quick search of online GP appointment booking systems quickly demonstrates the significant number of appointments available on any given today. While patients may not always be able to see the GP of their choice, the vast majority of practices provide patients with an option to see a GP.
The most recent Australian Bureau of Statistics Patient Experience Survey highlights that the proportion of patients who waited longer than they felt acceptable for a GP appointment has decreased, and has been decreasing in recent years, both in metropolitan and rural areas.
In my experience of general practice, practices always keep aside a number of appointments each day for acute cases. In addition, newer doctors to the practice will often have more appointments available as they build their patient lists. Cancelled appointments can be utilised by others who need them and we often squeeze in a patient between appointments.
All that is required is a little communication. Our patients should know that if they need to see us they only have to call to see if we can help them.
The story that it is too hard to see a GP is being perpetuated by other groups with their own agenda. Some use it to justify overhauling the health workforce while others use it to promote or improve their own business models. Most recently this argument has been propagated in an attempt aimed at circumventing the TGA’s recommended up-scheduling of codeine.
When it comes to pain management, the evidence is in. Low dose codeine is ineffective for the majority of people and it comes with significant health risks. Acute pain can be better treated with other combination analgesics which remain available over-the-counter (OTC).
Persistent pain should be a signal for patients to see their doctor, not a reason to escalate self-medication with a highly addictive drug. How many OTC purchasers of codeine products truly understand that, once metabolised, they are effectively using morphine. These ineffective medications not only carry the risk of addiction but the risk of harm by over use of their companion analgesics.
Frankly, I find the suggestion that GPs would be burdened by discussing with patients their pain and the best ways to treat or manage it, highly offensive. Reducing access to potentially harmful medications is good for patient care. A GP consultation for patients experiencing strong and persistent pain is the best pathway to a good health outcome.
GPs are busy, but we have seen a significant increase in GP numbers across the county. Access is much improved and our patients need to know that we are there for them, including on those occasions when they need more urgent care. Our politicians need to know this too.
As part of the AMA’s effort to spread this word, the Council of General Practice, at its recent meeting, agreed that the theme for next year’s Family Doctor Week will be ‘Your family doctor: here for you’. It is up to each of us to disseminate this message and to deliver on it.
[Comment] Bevacizumab in cervical cancer: a step forward for survival
Cervical cancer is the fourth most common cancer affecting women, with more than 500 000 new cases and more than 260 000 deaths worldwide in 2012.1 This statistic is disturbing given the fact that with the introduction of screening and HPV vaccination programmes, cervical cancer is now a preventable and curable disease. Once the disease is not salvageable, any treatment offered to patients is palliative. By contrast with most other solid cancers, the highest incidence of cervical cancer is in young women, with more than half of diagnoses occurring in women aged younger than 45 years.
When life is coming to a close: three common myths about dying
On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.
We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
Myth 1: positive thinking can delay death
The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.
Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.
For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.
Myth 2: dying at home means a good death
The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.
The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.
It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.
Myth 3: pushing on with futile treatment can’t hurt
A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.
There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.
The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.
Sarah Winch, Health Care Ethicist and Sociologist, The University of Queensland
This article was originally published on The Conversation. Read the original article.