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FUNDING, training and regulation are needed to make advance care planning “core business” across all health care sectors, says a leading advocate of advance care planning.
Associate Professor William Silvester, director of the Respecting Patient Choices program at Victoria’s Austin Hospital, said advance care planning (ACP) and end-of-life care discussions need to be seen as an important part of normal clinical practice.
“It applies just as much to a cardiologist who is looking after someone with end-stage heart failure as it does to a palliative care physician”, he said.
Professor Silvester was commenting on an MJA “Clinical Focus” article outlining strategies to embed ACP into routine clinical care. (1)
The authors, led by Professor Ian Scott, director of internal medicine and clinical epidemiology at Brisbane’s Princess Alexandra Hospital, wrote that ACP could invoke earlier initiation of more appropriate palliative care to reduce the undesired use of invasive interventions, lower the likelihood of inhospital death, prolong life of higher quality and decrease costs.
“In embedding ACP into routine practice, all health care organisations (general practices, hospitals, residential care facilities) need to become ‘conversation ready’; that is, committed to systematically eliciting, documenting and enacting patients’ care preferences”, they wrote.
Professor Silvester said health professionals needed communication skills and adequate time to discuss ACP with patients.
“You can talk about the importance of ACP until you’re blue in the face but unless health professionals are given the communication skills to hold these sensitive discussions, then it doesn’t occur. Unless you give people sufficient time to hold these discussions, it just doesn’t happen.”
Professor Silvester said regulation was also a major driver in the uptake of ACP, with the Australian Council on Healthcare Standards incorporating elements of ACP in hospital standards earlier this year. (2)
“These standards were introduced only a year ago and just simply by hospitals knowing the regulation is coming, we have achieved more attention for advance care planning in the last year than we have in the last 10 years … simply because people know this is what’s expected of them”, said Professor Silvester, who founded the Respecting Patient Choices program in 2002. The program is now established under various names in all Australian states and territories. (3)
Associate Professor Charlie Corke, senior intensive care specialist at Victoria’s Geelong Hospital, welcomed the MJA article. He said it not only emphasised the need for ACP, but also the many challenges in incorporating such planning into routine clinical care.
“Everybody knows that [ACP] needs to be done and recognises its importance, but they’re looking at it as somebody else’s responsibility”, he said.
“It needs a change in perception — that it is a role that’s expected of [clinicians]”, he said. That change has occurred in Geelong, where Professor Corke leads the regional Respecting Patient Choices program.
He said many Geelong GPs now routinely advocate ACP to patients, who were referred to trained facilitators funded by Barwon Health for the discussion and to ratify the forms. The GPs understood the value and “would not step back from it”, he said.
Palliative Care Australia (PCA) chief executive Dr Yvonne Luxford said there had been significant policy progress in ACP, from the support of programs such as Respecting Patient Choices to funding for advance care plans to be uploaded to personally controlled electronic health records.
However, she said consumer and health care professional knowledge of ACP remained “quite minimal”.
“When PCA have surveyed Australians about this issue, we have found that only one in two have even had conversations with their loved ones, let alone with their health professionals”, Dr Luxford said.
She wants education for health care professionals about palliative care and ACP that spans their entire careers.
“Health professionals are used to talking about delicate situations — that comes with the territory — but they’re often not as comfortable talking about death and dying”, she said.
Dr Luxford said the PCA was part of a consortium working on a federally funded project to provide a 24-hour advice line on palliative care and ACP. The program, targeted to the aged care sector, would also be linked into training programs and other palliative care initiatives.
Professor Corke said there was some way to go in arriving at the best approach to this complicated process.
He said systems needed to accommodate to the way people wanted to express their wishes and a one-size-fits-all solution was unlikely to be effective.
1. MJA 2013; 199: 662-666
2. Australian Council on Healthcare Standards 2013; EQuIPNational
3. Advance Care Planning Australia
See Joseph Ting: Final decision about the impact of end-of-life decisions confronting emergency medicine specialists.
My employment in within the health service in Warracknabeal, Victoria is focused on ACP and RPC program. The service saw a need for the service to be available to their residents, clients and the rest of the community so I was employed as an Advance Care Planning Co ordiantor. My job is to educate staff, residents and their family as well as the surrounding communities on the importance and value of having a say in their health. It is a great service provided by Warracknabeal to ensure that the momentun does not die and that people do have a say in the health care that is provided to them.
Following on from Jan McGregors comment re keeping the momentum alive. I am proud to say our local Health Service in Kyabram, a small rural town in Victoria, is doing just that. They offer the local Community the opportunity to complete Advance Care Plans.This free service is offered weekly. I commend the Health Service on their initiative and support of the importance of end of life choices.
Respecting the wish of the patient as paramount is a stumbling block for relatives and some health professionals and some regulatory bodies who mistakely think that doing “everything possible” is better for the dying person that doing what the patient wants, leading to the distressing scenarios outlined above .
If we portray the preparation of the ACP as advocating for the rights and wishes of the patient, we may have more success in persuading patients and some health professionals to engage in Advanced Care Planning.
Lack of respect for patient wishes is endemic not only in relatives of the wishing patient, but in some health professionals and some regulatory bodies who must confuse their own fear of death and dying with their duty to respect each persons right to choose or refuse treatment -” for whom the bell tolls-it tolls for thee.”
(John Donne)
It is encouraging to see the increasing awareness of ACP in the community, but we have a long way to go. There are many people working towards inproving access to palliative care and end of life care resources, including support for advance care planning, and while the comments posted confirm that progress is being made, we need to maintain the momentum.
i would like to echo Sue Ieraci’s comments on the importance of nursing homes being able to manage the death of their residents with repsect and humanity. An important concept in the safe transfer of patients between health faciltities is that we do not step down the level of care, that we ensure that we maintain the level care during a transfer to a destination with a higher level of care. When someone is well established in their nursing home residence and reaches a point where end of life is expected and specifically, acute hospitalisation is unlikely to change the ultimate course of their terminal illness, I personally believe that transfering them to a busy, lit, noisy, unfamilar emergency department is a step dpwn in care, at a time when comfort, dignity and acces to family if they are available, is probably the most meaningful thing we can offer that person.
Jane Andrews and Patrick Coleman make a very important point: while written orders are fairly routine in hospital practice, they are less consistent and often less useful in the community. It is relatively easy to decide that a very old, very incapacitated person should not have CPR at the time of cardiac arrest, or should not be ventilated in ICU. What is more crucial, as others say, is not to start the snowball rolling – but instead recognising when death is imminent and not calling an ambulance. I find that many families I interact with in ED, with a dying elderly relative, have a vague understanding that they are at the end of life, but have little understanding of what might happen, and what they might do, when the end eventually comes. I try to use ”near misses” as an example to show them what death might look like, and how it can be managed with humanity. SOme families will feel unable to manage the death at home, but nursing homes should certainly be able to. Let’s not forget that the old story that ”granny died in her sleep” was allowed to occur because nobody tried to rescuscitate her.
I endorse Professor Corke’s views and that the essential ingredients are communication and trust. Timing is important. Who has been party to the ACP is important. In intensive care and ER end of life issues are addressed. But ACP can be used to decide goals and preferred place of care. An enduring Medical Power of Attorney appointment of a trusted friend may be more relevant than a family member in respecting patient choices. The Medical Treatment Act 1988 (Vic) regards the patient’s wish as paramount and exonerates doctors who act in respect of the patient’s wishes, yet the AHPRA Act (2005) does not even include the patient’s wish in determinations of unprofessional and misconduct. The clinical role of ACPs is becoming clearer, as must goal of therapy and discharge planning be built into any management plan. In 2000, the Medical Board decided that advocacy constituted misconduct, as did the Tribunal and Chief Justice Margaret Warren, who ignored the benchmark Act. Patient’s wish defines “best interest”. I advocated for her return home, at her request. The daughter in law opposed this. Advocacy is the Tribunal’s reason now to deregister me. Yet, in granting leave to appeal the 2000, 2003 decisions Buchanan J and Nettle J [VSCA No. 7516 of 2004] recognised “error below, wrong and tenable grounds”. What is now promoted as routine practice and was decided as not in the Journal’s interests to publish a few years ago is now!
Our experience at the Public Hospital where I work as a VMO General Physician exactly mirrors Dr Jane Andrews experience. As a starting point, I provide many of my patients with a copy of Adele Horin’s article “Tough Conversation Worth Having” (available on line). Thereafter, I encourage them to check out NSW Health website: Planningaheadtools. In an ideal world, to address the issues so eloquently outlined above by Dr Andrews, each hospital would have a dedicated co-ordinator of Advance Care Planning. Funding of such positions would reduce the unnecessary distress to patients and provide them with greater autonomy. It would also be likely to prove “cost negative”. Having these conversations early may seem confronting but are ultimately likely to reduce anxiety and suffering for both patients and their families.
It’s about time that there was large discussion about ACPs and end of life planning by the general public. Whilst it influences what happens in hospitals, the place for this discussion to best take place is before there is any need for acute hospital care, and particularly before there is an acute, emotionally charged issue in an elderly person. These plans need to be brought up as a routine part of primary care as people age, and perhaps there should even be consideration of making some discussion about ACPing before ACAT related funding can be accessed? As someone who has spent many years in general medicine and acute care in large public hospitals, it is apparent that many people are inappropriately sent to emergency departments simply because there has been no discussion around end of life decisions (or none recorded), leading to the default action being an ambulance call, despite there being little hope that acute medical care will be in the person’s best interests. This is ultimately distressing for all concerned and wastes a large amount of our limited funding resources.
i have always advocated end of life choices as a GP. I have had an AHD since my 40s after a discussion at a medical reunion. When to start discussing though. By our 30 year reunion we had lost 12 of our cohort. Also many would like voluntary euthanasia and this choice is being withheld due to a minority view
I agree with the comments expressed here regarding ACP. There is certainly a reluctance from many medical practitioners to broach the topic of death with patients and their families. However the importance of having clear directives in regard to end-of-life management cannot be overemphasised. It has huge socio-ecomic implications. ACP is not an easy subject to confront but a very important one. ACP on the ICU is more clear cut and definitive in regard to this issue than planning on the general wards but is just as necessary.