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Discussion 1.3: Advance Care Planning

6 months ago
CLOSED: This discussion has concluded.

April 16th was Advance Care Planning Day 2018!

60% of Canadians think it is important to talk about end of life care, but only 5% have talked to their doctor about it. (Canadian Hospice Palliative Care Association, What Canadians Say: The Way Forward Survey Report, for The Way Forward initiative, Harris/Decima: 2013)

What supports do you need to engage in advance care planning with people with life-threatening illnesses and their families?

This consultation is now closed.


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  • Pallfan2018 over 1 year ago
    Advance Care Planning has been part and parcel of the Alberta work for a number of years but has had its challenges. The biggest challenge is with integrating in to care at all levels from primary care through acute hospital care and all in between. In the community, we find patients and families want to have disucssions but providers are not necessarily equipped for these discussions for a variety of reasons, time being one. While we have developed resources to help support the conversations, experience has shown that it takes a committed patient to be prepared for the discussions that are needed. When ACP is requested to be codified in our Goals of Care Designation, we find many patients and families have a "deer in the headlights" sense unless they have initiated the conversation. Better public education and further supports for patients and families are required to make the conversations easier and more productive. We actually did a video called "Talking Turkey at Christmas" at one point to raise the profile of the issue when families are together at the holidays but uptake was not great, unfortunately. Ideas welcomed as to how to better penetrate the concept into public consciousness!
  • CFHI_FCASS over 1 year ago
    There are many organizations that are currently focused on strategies and processes to encourage and support proactive advance care planning and serious illness conversations. Improvements are needed to this aspect of care as there continues to be a significant gap between what Canadians say they want at the end-of-life and the care they receive. Quality improvement methodology can and should be applied to advance care planning and serious illness conversations so that health systems can set targets, track what is happening and design strategies to achieve those targets. While jurisdictional differences in legal frameworks exist, there is an opportunity in the Canadian context for intentional collaboration among the many organizations with an interest in improving advance care planning and serious illness discussions. CFHI actively supports the important role of patients and families as partners in quality improvement and system design by embedding them in interprofessional improvement teams. Integrating advance care planning discussions and person-centred approaches to care are initiatives where patient partner voices can be a powerful tool for driving improvement and closing the gap between the current state of end-of-life care and the express wishes of Canadians.
  • CanadianVirtualHospice over 1 year ago
    The Canadian Virtual Hospice (http://virtualhospice.ca) provides information on the excellent resources that already exist to address advanced care planning in Canada (such as Speak up, and specific provincial/territorial or regional information). The information we provide online is helpful for health care providers to share with their patients and families. This includes an article on decision making and another on advance care planning across Canada. Our hope is that by equipping health care providers with the appropriate resources that the number of Canadians talking and planning for their end-of-life care will increase. It is the education of health care providers that is essential to initiating and engaging in ongoing difficult conversations.
  • rhetoric_ally over 1 year ago
    Advanced Care Planning needs to be integrated in all levels of training and care, so that these discussions are normalized and the fear is dissipated. The patient's family doctor, specialists, next of kin, and family/friends need to all be in on this discussion with the patient. That way, should their diagnosis progress or something happen where the patient can't communicate, their wishes are widely known and will be acted upon. A form like 'Goals of Care' indicating the level you wish to be cared for is helpful to have and discussed with the medical team.
    Hide reply (1)
    • alliedhealthworker over 1 year ago
      I agree and also think this extends further to normalize ACP conversations. Really, each of us should be having these while we are healthy, so talking about those conversations earlier in life (and prior to life-limiting disease diagnosis) would help to make these conversations part of our cultural vocabulary.
  • yinyang over 1 year ago
    La Loi concernant les soins de fin de vie (Loi), adoptée au Québec en décembre 2015, a pour but d'assurer aux personnes en fin de vie des soins respectueux de leur dignité et de leur autonomie et de reconnaître la primauté des volontés exprimées clairement et librement par une personne. La Loi met également en place le régime des directives anticipées (DMA) et précise notamment les exigences à respecter pour que ces directives aient une valeur contraignante : c'est-à-dire que les professionnels de la santé qui y ont accès ont l'obligation de les respecter.Plus précisément, les DMA consistent en un écrit par lequel une personne majeure et apte à consentir à des soins indique à l'avance les soins médicaux qu'elle accepte ou refuse de recevoir dans le cas où elle deviendrait inapte à consentir à des soins dans des situations cliniques précises. Afin de faire connaître ce nouveau régime auprès de la population et des différents professionnels concernés, divers véhicules de communication sont utilisés et qui mettent de l'avant les messages suivants : 1) il est important d'exprimer à l'avance ses volontés en cas d'inaptitude à consentir à des soins, et ce, alors qu'on est apte, 2) avant de prendre une décision quant à nos volontés de soins en prévision de l'inaptitude, il est important de réfléchir aux valeurs qui nous animent, 3) ces questions sont importantes, discutez de nos valeurs et de nos volontés avec nos proches, 4) les DMA s'appliquent à des situations clinique précises qu'il est important de bien comprendre et pour lequel l'éclairage de notre médecin et autres professionnels de la santé peut être aidant.Nous croyons que l'ensemble de ces considérations, bien que prévues en cas d'inaptitude, peuvent s'avérer des opportunités en or pour aborder la planification préalable des soins à la fois du côté des patients et celui des soignants.
  • arcticfox over 1 year ago
    There is a huge need for specialized tools for supporting and facilitating the conversations, to be of use by all health care providers. From there, this could be expanded to the general public so the tool can pick up where advanced directives have been unsuccessful.
  • acritch over 1 year ago
    As a community support social worker, I have conversation with my clients frequently about Advance Care Planning. I have experience in other settings where this is conversation occurs often (i.e. long term care facilities, personal care homes). I am personally comfortable having these conversations, as it is integrated into my annual home support assessments, however more training could be beneficial. It is also important to provide people with educational material on Advance Health Care planning and how to complete an Advanced Health Care directives. There is very little material out there to provide families around completing an Advanced Health Care Directive and what is out there is dated. I think a standard document would be extremely beneficial for all parties.
  • KM_2018 over 1 year ago
    Education is key here. We need to normalize these conversations so they are not so scary for both the health care professional and the patient. Education needs to touch all health care professionals - Dr, RN , RTT, Social Worker, RRT, etc. If we bring it back to the community, say for example, a yearly discussion with your family doctor at a regular apt, I think this would help make these conversations easier to have and reduce the stress/fear around them. Then when said patient has a specialist apt, or is faced with a serious illness, repeating these conversations won't seem so scary, but more the norm. Time is a big factor as well. These conversations cannot be rushed, and we have to find a way to build time into an already time sensitive apt to have these conversations.
  • afoxrob over 1 year ago
    Advanced care planning needs to be imbedded in all health care professional training (RN, PA, MD and RRT). Many health care professionals do not feel comfortable having this conversation (similar to the work being done around serious illness conversation).
  • PallRNKaren over 1 year ago
    Education for community nurses and supports to have these difficult conversations.
  • gylemcf over 1 year ago
    As mentioned, many great resources exist. We need to bring awareness to the public and get people interested and asking questions of their health care providers. Health care providers need to be better trained on the importance of this subject, and have more practice and exposure to this throughout training.There needs to be a push in the primary care community to incorporate ACP into regular patient encounters (chronic disease appts, periodic health exams). The conversation should be continued and echoed by specialists who provide care to patients with chronic diseases - ie. everyone! The biggest barriers are time and perceived lack of skill/unpreparedness to have the conversations.
  • JenniferM over 1 year ago
    Anyone can do ACP, there are public sessions on how to do them (Province by Province) and the myspeakupplan is a fantastic resource. You do not need a DR, to do ACP. It may increase the feeling of need, if a DR recommended it, but all persons over the age of 19 should be completing ACP.
  • livermore over 1 year ago
    Training for workers providing home care services to help them introduce the topic to their clients
  • melmay over 1 year ago
    NB does not have a provincial branch for the Speak Up Campaign. We have no one formulating province specific information, education for our population. I have ordered materials from the Speak Up website and done some teaching to my staff locally. There are pockets of the province where education is taking place. No one is spear heading this initiative.
  • Flatly over 1 year ago
    The very phrasing of this question is an example of how misunderstood ACP is, even among health professionals and others with a special interest in the area. Unlike goals of care (established after a dx), ACP ideally occurs BEFORE a life-threatening illness has occurred. Both allows individuals to think about and communicate what's important to them, what they value, but only goals of care do that in the context of what is possible given a life-shortening/changing illness trajectory. It may seem like semantics, but it is important because standadised language means effective communication- especially when there may not be a second chance. ACP is speculative- it does not need to relate to a specific illness or situation. Obviously patients and health providers will benefit from standardising the language of ACP and end of life decision options. While ways of documenting ACP across settings where people access end of life care won't necessarily be identical, the words used to describe options should be.
  • Community Hospice Champion over 1 year ago
    What we need is; first is a call for universal education and training for all health professionals and clinicians (e.g., physicians, nurses, social workers and others) in the core principles and practices of palliative care. These practices include pain and symptom management; the safe and effective use of opioids; skilled communication with patients and their families to help them determine their goals; how the health care system can help them achieve those goals; and seamless, well-coordinated and well-communicated care, across multiple settings, over time. We professionals who are prepared, educated and confident in having the conversationThis also concerns coverage of both the social and medical needs of the most serious and complex patients. Approximately 40 percent of all medical spending is precipitated by unmet social support needs, including low literacy, language barriers, poor nutrition, unsafe housing, family violence, mental illness and—perhaps most important of all—the absence of support for exhausted and overwhelmed family caregivers.
  • snicolson over 1 year ago
    We have great resources available- Speak Up....We need family physicians to begin these conversations with their patients and steer them towards the resources.This is a complicated issue.There needs to be a focus on Informed Consent and what that looks like.We need resources to simplify the messages we give to people.I come from a hospital setting. Many times patients are making healthcare decisions and they dont have enough information.IE: This proceedure may prolong your life but you will never get to go home, you won't be able to eat your favourite meal .......This is what most people understand - not do you want to to be coded?
  • Q321@# over 1 year ago
    We share the resources and information developed by the Speak Up campaign and some of the campaigns launched across Canada in relation to palliative care.
  • palliumcanada over 1 year ago
    Pallium has a module dedicated to Advance Care Planning (ACP) in all its courses as we recognize the importance of ensuring that a patient’s wishes are respected at end-of-life care, when they become unable to speak for themselves. Importantly, improved and more frequent ACP and goals of care discussions are ranked amongst the top five things most commonly implemented into practice as a result of doing the LEAP courses when thousands of reflections by LEAP course participants, collected 4-months after participating in a LEAP course, were analyzed. Pallium supports health providers with tools and resources on how to discuss Advance Care Planning with their patients and families properly, allowing both sides to have meaningful conversations. These also include tools from the Speak Up campaign such as booklets and pamphlets. We also participate in efforts to raise awareness with the public about Advance Care Planning through the annual National Advance Care Planning Day.Currently, different rules and regulations for Advance Care Planning in different regions across the country make it challenging for patients, caregivers, health care providers to undertake Advance Care Planning. For Pallium and its partners, it is challenging to develop appropriate content on Advance Care Planning that is relevant for each region. Development of a national standard, or a national body overseeing Advance Care Planning in Canada, would provide key supports and remove barriers to effective Advance Care Planning across the country.
  • arob over 1 year ago
    I really respect the work of the "Speak up" campaign...I promote it whenever I can (articles in our local paper, kiosks, posters...) The message needs to go out to everyone. It would be great to link with another service as organ donation did with driver's licenses. There has been talk about including information/discussion re SDM (as opposed to next of kin) on admission to hospital (could be a starting place?)
  • jcruikshank over 1 year ago
    The CHPCA advocates for the importance of advance care planning for all Canadians, primarily through targeted education and awareness campaigns and www.advancecareplanning.ca, to increase Canadians’ understanding of what is involved, what their rights are, and how palliative care can be a part of their advance care plan. To better deliver this information CHPCA requires continued funding to maintain an online presence, as well as dedicated staff positions to continue to do the essential work of creating a strong presence for advance care planning within the healthcare landscape.CHPCA also manages the Speak Up Campaign, which is part of the larger Advance Planning in Canada initiative. This initiative is overseen by a National Advance Care Planning Task Group comprised of individuals representing a spectrum of disciplines including healthcare, law, ethics, research, and national not-for-profit organizations.
  • alliedhealthworker over 1 year ago
    I think having ACP resources that are multilingual and communicatively accessible (i.e., for communication disorders) would also be helpful.
  • PalliativeMD over 1 year ago
    There are no billing codes for Advance Care Planning in most provinces. If the activity is not funded by provincial insurance plans, it is unlikely to happen. ACP used to be done as part of annual physical, but these have since been discouraged and even periodic health exams are no longer recommended. If patients want to engage in ACP with their physician, it needs to be a medically insured service. ACP is not something that can or should be just tacked on to other visits or mixed in with other issues. Discrete and dedicated appointments to address goals, wishes and values should be carved as a benefit in every provinces/territories insurance plan.Plenty of tools already exist and are customized to each province's distinct laws and nuances.
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    • NurseDar over 1 year ago
      Absolutely! Establishing goals of care is so important rather than diving into offering often futile treatments to people when they may not have wanted or benefitted from them. It saves time and $$$$. Without ACP patients palliative patients often report inappropriately to the ER or seek 3rd and 4th line cancer treatments when they could be receiving other treatments aimed at comfort and support and improving QUALITY of LIFE not focusing on QUANTITY of life which often comes with the price of untoward side effects.
    • Robin over 1 year ago
      I wonder if it needs to be a fee for service issue at all. Given the time and billing limits of physicians in our current healthcare system, perhaps it would be more appropriate to have other healthcare providers offer this service, i.e. RNs or NPs. Having dedicated, salaried providers to engage in these important ACP and goals of care conversations with people and their families would decrease the incidence of unwanted care, increase satisfaction with care, and save the healthcare system money.
  • Pall-life over 1 year ago
    Ontario Laws have to be updated to include ACP as part of our legal language. The laws in Ontario impacting ACP have not been updated since their creation in 1992 (Substitute Decisions Act) and 1996 (Health Care Consent Act) to include ACP.As part of ACP in Ontario, we need to ensure that the DNR Confirmation form is available and completed if a person does not want paramedics to initiate CPR. I understand the form is being revised. Because Ontario laws are highly reliant on the Substitute Decision Maker, I am aware of some people asking why do an ACP? Regardless of the status of the laws it is good to have discussions about our values as it relates to care. I believe the Ontario Renal Network is doing an excellent job promoting ACP. I believe that doing ACP will be more successful in the context of chronic disease management. Generally speaking patients, their families and clinicians get to know each other over time and have opportunities to open up discussions about ACP, answer questions and create a plan that is relevant to their circumstance. In a clinic setting all staff, with training, could open up the ACP discussions and do the follow up. Some regions and provinces are being educated in and promoting the 'Difficult Conversation Guide' which is a very good tool to use. In the context of a chronic illness like renal disease, ALS, heart failure, dementia, illness trajectory is better able to be determined as it is a lived experience by patients and families. Consequently, doing ACP could be a little easier as patients and their families a better sense of what is likely to happen. As an aside I see ACP as applying not only to end of life care but could apply in situations such as mental health where a person may experience times when they cannot make decisions for themselves and want to appoint a decision maker and direct what care they might want or not. Lastly, when I teach ACP in community settings I always make the point that ACP is a gift that you give your family, loved ones that lasts not only when difficult decisions have to be made but afterwards when a person has died and questions arise about why treatments were either initiated or not. For example at the funeral or reading of the will some may ask why wasn't CPR done, why weren't they admitted to ICU? The SDM, loved one of the deceased can with confidence say "I did what they wanted," if the SDM had a well considered and applicable ACP.
  • veejay over 1 year ago
    We have developed our in-house ACP booklet for nephrology patients and have incorporated advance care planning into our workflow throughout our program. ACP and goals of care conversations are mandated by the Ontario Renal Network. We provide ACP and GOC conversations with our pts and families in different points of their nephrology journey i.e. MCKC, Home dialysis, ICHD, no dialysis; and record/document these conversations. We also provide documentation that our pts can share with their families through our CCRC package/kit
  • alliedhealthworker over 1 year ago
    Our institution has ACP guides and electronic learning modules. I could see there being benefit to expand this to include opportunities for care providers to learn communication skills to have effective ACP conversations (e.g., using simulation and/or role play).
  • Smith over 1 year ago
    Advance care Planning information should be posted in every Dr.'s office and clinic. All physicians and medical support staff should be trained to have these discussions with their patients. We are having these discussions too little ,too late and not great . A government campaign would help normalize and ensure everyone knew what it was and knew who they should talk to.
  • OPSWASylvia over 1 year ago
    The supports that are needed to open the conversation to ACP to people facing this challenge are the right knowledge, information and resources from professionals in the legal and healthcare field. Many people can be involved in this process, doctors, lawyers, psychologists, clergy, etc. People need to be informed in order to make the right decisions for them. Aside from the financial issues, there are also emotional, spiritual and psychological concerns that need to be addressed. Everyone needs to be supportive and non-judgemental and this could encompass inter-disciplinary collaboration.