Medicine can do many things but at the end of life what matters most is not necessarily treatment but making peace with yourself on your terms. Atul Gawande, Being Mortal.
Advanced care planning is an evolving process where individuals outline their wishes regarding their care and medical decision-making based on their values and beliefs when their voice is silent due to incapacity.
A few years ago, I participated in a working group of medical, legal, and other experts to share ideas and develop an action plan to improve how POAPCs are planned, drafted, tracked, and utilized. Some of the key discussion points continue to influence our practice.
I explore two issues here. First, I look at the disconnect between the language used in the POAPC and the on-the-ground reality of implementing those wishes in a healthcare setting. And second, the importance of having ready access to the POAPC document when it’s needed.
The Language of a POAPC Should Reflect the Reality of Implementing it in Health Care
Consider the following suggestions.
- It is most helpful if the advance care planning discussions and the resulting POAPC are drafted within the context of a person’s general values, beliefs and wishes. It is also helpful if there is a discussion with the appointed attorney about those wishes and why the grantor has chosen certain courses of action.
We often see situations where the attorney is unaware of the grantor’s wishes or what quality of life means to them. And in some cases, the attorney does not even know they have been appointed.
Depending on the circumstances, people can also change their views on advanced care planning. For example, since the COVID pandemic, we find older people have a heightened awareness of the need for end-of-life or serious illness planning. One couple in their nineties, both retired health care practitioners, changed their POAPC documents. If they got COVID and became gravely ill with pneumonia, it was clear that they did not want to be intubated and ventilated. They decided they had lived full lives and wanted to make their own decisions. If they became critically ill, they did not want their life prolonged with mechanical ventilation.
- Medical experts find it difficult to be guided by POAPC documents when vague terminology such as “no heroic measures” is used. This term gives no direction in today’s sophisticated treatment environment and can cause additional stress and anxiety for the attorney trying to make a difficult care decision. While it is impossible to anticipate every medical situation, describing some context for decision-making is possible. For example, listing wishes such as pain management and palliation for comfort if the grantor is in certain situations, such as no reasonable expectation for recovery, etc.
Ready Access to the POAPC Document
From the healthcare provider’s perspective, when a patient is in a critical or urgent state and cannot speak for themselves, the provider will try to find or speak with the substitute decision-maker. Immediate access to the POAPC document is important as it confirms the person’s choice of substitute decision-maker and may confirm advance care directives for specific situations.
Here are some suggestions to improve access:
- Suggest that clients carry a wallet card that identifies their POAPC and how to contact them. Also, identify who has a copy of the POAPC document. For clients with serious illnesses, we suggest their partner/caregiver carry a copy of their POAPC in the glove compartment of their car so they can always access it – especially during those midnight runs to the hospital.
- In this era of electronic health records, it’s important to consider the POAPC as part of the patient’s health record. The family doctor can append it to the electronic health record (EHR). However, the family doctor’s EHR sometimes won’t integrate with the hospital’s EHR. In that case, have the hospital add the POAPC to its EHR. If someone is admitted to the hospital, append a paper copy to the chart.
- Some health information experts have advocated for an online registry of POAPCs. Much like the online organ donation registry, it would give healthcare providers ready access to your documents in an emergency. Others have suggested the POAPC be linked to the provincial OHIP card. There have been many discussions but no policy decisions to date.
In summary, advance care planning should be an important part of everyone’s care planning for serious illnesses and end-of-life. The POAPC is a powerful legal document which can ultimately provide a clear decision-making framework and specific directives to your substitute decision-maker when you cannot speak for yourself. And once you have that document in place, all relevant parties need ready access in an emergency.