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Planning Early

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There is a lack of understanding around the legal boundaries associated with designating a Power of Attorney and the responsibilities required to fulfill that role. As well, the authority allocated to the Power of Attorney, and the potential impact on the family unit, are also not well understood, especially when decision-making is involved.

Power of the Power of Attorney
Many of the healthcare practitioners interviewed referred to the importance of the Power of Attorney (POA), as both the substitute decision-maker for the patient and the primary point of contact for the communication of information to other members of the family unit and the larger social circle, if they so choose. The parameters of the POA dictate that “legally it’s only the POA” that receives confidential medical information and not anyone else, regardless of the relationship to the patient.

“I have to go to the POA or substitute decision-maker. So if you are asking any questions…[your mom] is my point of contact. I will give her all the information, but it’s her role to decide what she wants to do with that. I would give you the same information that your mom has allowed me to give you but if you asked in particular, I would say ‘you have to ask your mom about that.’” — Nurse  

The privacy and confidentiality of the patient comes first and is always protected. Healthcare practitioners all acknowledged the importance of the POA and the boundaries that are attributed to the role. If there were multiple POAs within a family, then everyone would have the ability to receive information directly from the healthcare practitioners. It was also not unusual for POAs to give permission for doctors and nurses to provide updates to Distance Family Members if they asked.

“I usually speak to the person who’s the designated substitute decision-maker…and then they would share it with everyone else. But, if a family member says ‘can you call so-and-so directly,’ then I’ll do that. That happens fairly frequently, or that person will sometimes call and speak to the nursing staff and request that the doctor calls them.” — Doctor

However, there was a suggestion that there is sometimes room within everyday practice for some disclosure of information, based on how well known the Distance Family Member is to the practitioner. If the attending doctor or nurse had met the Distance Family Member on numerous occasions, they would be more likely to communicate information when the Distance Family Member called. Some healthcare practitioners also suggested that POAs might not always have a clear understanding of what responsibilities are associated with the role and that families generally did not understand the implications of the POA, especially related to access of information on the patient’s status.

Advance Care Planning
Closely associated with the role of the Power of Attorney is the concept of Advance Care Planning, which identifies a person’s wishes for medical interventions and goals of care at end-of-life and identifies an alternate decision-maker to carry out those wishes if they are unable to. During the interviews with healthcare practitioners, the POA and alternate decision-maker roles were often used interchangeably. It is critical that healthcare practitioners are able to identify patient preferences, as they inform the many choices available throughout a life-limiting illness. It is even more important that patients express their wishes clearly, so they are not subjected to medical interventions they may not have wanted if they were able to speak for themselves. However, recent statistics suggest that only 25% of Canadians over 30 have completed Advance Care Plans (Environics Research Group, 2013).

The absence of an Advance Care Plan can be the cause of significant conflict within families. In cases when an Advance Care Plan has been completed but has not been shared equally among family members, conflicting opinions on medical options often play out in the ER or even in the home—since the goals of care are not clear. When a patient has determined that their end-of-life wishes will include a palliative approach, it is critical that all family in the patient’s core circle understand what a palliative philosophy means and that everyone who needs to know—and might weigh in at a later date—is also informed of the patient’s wishes.

“I think a big thing that will help in palliative…is advance care plans because, no matter what, the POA is supposed to act on behalf of the patient and until you know what the patient wants from an earlier time…then all of the complications are null and void because it doesn’t really matter in the end what everyone else wants if they know what the patient wants.” — Social Worker 

It is important to note that many healthcare practitioners acknowledged the difficulty that patients and families faced when making decisions regarding end-of-life during a time of crisis. In the situation where a patient had not engaged their family in conversations about end-of-life wishes before the life-limiting illness, it was very difficult to determine those wishes while also coming to terms with the disease.

“I get involved in some really difficult cases where we walk into the home to have those discussions with clients and as much as the family members want to have those conversations, the client will say ‘we’re not having those conversations’ because they are still trying to process that they have a life threatening illness and there is no cure.” — Nurse 

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Healthcare practitioners reiterated that “if you have a crisis oriented gathering, it’s game over” and that it is increasingly important to make decisions about end-of-life—and have those conversations—far in advance of a potential health-care crisis.

“What I see is that it’s really painful to do the present when steps have not been taken to address the inevitable. So I am trying to back it up and trying to get people involved at a much earlier stage so that when you get to the palliative care stage, these steps are done, the conversations have begun, you have a plan and you’re not just scrambling…it’s way too late to wait until it’s in palliative…it’s way too late.” — Social Worker

Defining what is important for goals of care and identifying the people who should be included, and the roles they will play, is a critical component of Advance Care Planning. Determining wishes earlier, rather than later, offers families the opportunity to set their path with clarity and lay claim to what is important to the individual and their family. In terms of supporting Distance Family Members as part of Advance Care Planning, one healthcare practitioner suggested that it is essential to “reclaim some of what is important to you. So if making sure everyone is hearing the same information…if that is important to you as a family, then you have to name it early on.” — Social Worker  

The Who and What of Advance Care Planning?
Most healthcare practitioners agreed the responsibility for having early conversations about end-of-life was a natural fit for the family physician; one doctor shared a pilot project that inserted the conversation “in the annual physical, like a stamp.” Specialists, ER doctors, palliative care doctors, nurses and social workers also have opportunities to introduce the topic at various points across the illness trajectory, as the patient moves through the healthcare system. These conversations support patients and caregivers in end-of-life decision-making, regardless of whether a formalized Advance Care Plan is the outcome.

However, even though most healthcare practitioners agreed that end-of-life conversations needed guidance from someone with expertise, they did not necessarily restrict conversations to live within a healthcare environment. Individuals and families could begin to think about these issues themselves and the conversation did not need to “be driven by healthcare, [but rather] it needs to be driven by society.”

Barriers to Early Advance Care Planning
Recent statistics suggest that only 25% of Canadians over 30 are currently completing Advance Care Plans (Environics Research Group, 2013) and a number of barriers arose during this research project to support why that might be the case. Many healthcare practitioners shared stories about patients and families wanting to wait until later to discussion plans, as they were focused on treatment options or sometimes family norms did not include opening discussions about death and dying.

From the healthcare practitioner’s point of view, conversations about end-of-life have not been a consistent part of patient-doctor/nurse interactions in the past, and even though the importance of Advance Care Planning is acknowledged, it is still a new expectation. As well, healthcare practitioners haven’t always had the training required for guiding these conversations. When they do initiate conversations, they can be limited to the do-not-resuscitate (DNR) order rather than the broader conversation about goals of care. Finally, the societal barriers of not wanting to talk about death and dying—and the general “stigma where if you’re doing an advance care plan, you’re saying ‘I’m going to die soon’”—contributes greatly to a general lack of acceptance. Instead, healthcare practitioners agreed that Advance Care Planning can be “self-empowering” and will go a long way to ensuring that individuals are able to make choices for themselves about interventions and options at end-of-life.

“…when you actually can communicate all along the way and make a plan, roles that involve everyone, with an engaged healthcare system, and a conversation with the doctor at the point when treatment is no longer effective, then you all rally together. You know death is imminent and when you come together you end it well together. Whether you do that in a residential hospice or whether you do that at home…you don’t do it in an ER.” — Social Worker  

DESIGN IMPLICATIONS
Advance Care Planning is best discussed early, ideally before a critical illness. Plans should be shared with family members and consider parameters for communication and distribution of information.

Design interventions connected to Advance Care Planning should acknowledge the advantage of encouraging conversations as early as possible, but will also need to address the underlying challenge of asking a society with a fear of death to make plans for their own final days.

As the aging population edges closer to this phase of life, it is more and more critical that Advance Care Plans are adopted more broadly, as demands on time and resources in the healthcare system will only become greater. Despite increasing demands on the healthcare system, proposed interventions should acknow-ledge the current belief that end-of-life conversations are best embedded in the healthcare system and that there is an important role for family facilitation by someone with expertise.

The positioning of the Power of Attorney—as the conduit for information distribution—is an important consideration in addition to the traditional decision-making requirements associated with the role. For both the Power of Attorney and Advance Care Planning, providing a framework to share individual decisions with family members should be considered and, specific to the Distance Family Member, should take into consideration communication and distribution of information needs.



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