How Can We Get Lawyers to Change the Way They Do Advance Medical Care Planning With Their Clients? a Physician’s Reflections
I recently visited with a friend in my hometown in Lethbridge, Alberta who is struggling with an incurable cancer. He was suffers from pain, confusion, and despair. He loves his life and his family and is sad to think about dying.
I asked about his future medical plans and his wife proudly declared, “we’ve been to the lawyer and filled out those forms” — suggesting that nothing more needed to be done. But can a form filled out in a lawyer’s office really ensure that you get the medical care that’s right for you?
I asked my friend’s wife for a copy of the forms that she received from their lawyer. She gave me his personal directive, which named his ‘agent’ or substitute decision-maker (SDM), someone who would speak for and make decisions for him if he was unable to speak for himself to make medical decisions. It provided the instructions shown in the box:
At face value, these statements seem reasonable for a planning your future medical care. But many of these statements may be problematic or even unhelpful when medical decisions need to actually be made in real time when an acute health situation is at hand. Let me explain why from my perspective as a critical care doctor working in the Canadian health care system for more than 20 years.
First, the language in this planning document is for terminal care only. While that might be important for patients with incurable cancer at the end of their lives, it is not relevant to the majority of Canadians facing serious illness, where there is a probability of dying but also a probability of surviving. During serious illness, like a heart attack or stroke, patients are hospitalized and require decisions about the level of medical care that is appropriate to their clinical condition. There are 10 times more Canadians every year facing serious illness than those planning for their terminal care (8,000 per 100,000 in-patient hospitalizations[i] vs. 800 deaths per 100,000 population[ii]). The discrimination between serious illness and terminal care is not trivial. Planning for a certain death is not the same as planning for an uncertain outcome associated with serious illness. Many of the scenarios in the document list treatment preferences under conditions of certainty- for example, when a certain situation exists, then these treatments should not be provided. Unfortunately, at the point when we need to make a decision to apply or not to apply life-sustaining treatments, the outcome is not known and is uncertain. So, this planning under conditions of certainty is not helpful to us as heath care professionals. Additionally, by the time a person does arrive at some of these hopeless outcomes outlined in my friend’s document, which happens in an infinitesimally small percentage of medical encounters, life-supports would not be offered. Thus, forms like these create a false expectation that there will be a menu of all treatments offered for all clinical indications when in fact, resuscitation or intensive care medicine would not be indicated in some of those irreversible, poor health states.
Perhaps what is more distressing is that some lawyers maybe violating principles and practices associated with shared decision-making regarding medical decisions. Our research shows that seriously ill patients want to make decisions with doctors under a ‘shared decision-making’ model.[iii] The clinicians bring their medical expertise to bear whilst the patient (or representative) are experts in their own personhood and what is important to them. Together, they collaborate in a way that the patient gets the care that is right for them. International medical societies endorse this way of making medical decisions. Practically, this means that a doctor and a patient (or their representative) engage in a rich conversation so that the patient (or SDM) understand the various treatment options, their risks, benefits and possible outcomes, so they can make an informed decision at that moment in time. This process does not occur when people sit with their lawyers and make ill-informed treatment decisions which are then codified in legal documents as ‘instructions to a health care professional.’ These statements have no legal standing in many provinces, such as Ontario[iv], and even where lawful, do not represent what’s best for the patients/clients we serve.
Another problem with having lawyers do health planning is the difficulty in interpreting the language of these documents. For example, what do we mean by “severe and permanent impairment”? This can mean many things to many people – some might consider being in a wheelchair in a nursing home to be ‘acceptable as long as they are able to interact and enjoy family and friends while others might consider that to be worse than death. There are many ‘shades’ of neurological impairment and doctors will have difficulty operationalizing this diagnosis. The American Bar Association recently stated, “Discussion [with lawyers] should focus on one’s values, goals, and priorities in the event of worsening health rather than on specific treatments or clinical interventions for distant hypothetical situations.” [v]
Finally, as illustrated with the anecdote with my friend, going thru this planning process with a lawyer leaves a person thinking that they have done their advance care planning and that there’s nothing left to do (see Figure). But preparing the legal document to name the agent or SDM is just the beginning. After the paperwork has been signed, the important work of communicating values and wishes to family and friends, and especially the SDM– has just begun. In my clinical experience, I would judge that most people (both patients and their SDM and families) are ill-prepared to engage with clinicians to make these decisions related to what medical treatments are right for the patient when they are seriously ill. Consequently, patients suffer as they get the ‘wrong’ care[vi], families and SDMs suffer because they are stressed out by being thrust into a decision-making encounter when they don’t know what to do or say.[vii] We need to do a better job preparing patients and their SDM for future serious illness decision-making.
So how can we get the legal profession to respect health care best practices while still helping people with their advance care planning? It’s definitely important to decide who would be a good substitute decision maker and complete legal documents that indicate who would represent you if you were unable to make decisions for yourself. But the language of these legal planning documents needs to change so the instructions are to the SDM, not health care professionals and the key instructions are that the SDM should be governed by the values and preferences of the person they are representing.
Lawyers are key partners in preparing people to ‘think ahead and plan ahead’. Since they already have a ‘foot in the door’ (e.g. someone wanting to engage in financial or legal planning for the future), they can help their clients continue the processes by providing resources and information about how to plan for future healthcare decisions and have conversations with family and health care professionals. And they can discuss health care law with their clients, so that they understand the roles and responsibilities of substitute decision makers as well as the importance of communicating values, preferences and beliefs in case of serious illness. The goal of this advance work is to help patients (and their SDMs) to be ‘decisionally ready’ when they face serious illness and doctors are engaging them to make major life and death decisions.[viii] We have created a new planning tool, www.planwellguide.com that enables this key process step and would love to collaborate with lawyers in this preparatory process.
It can be challenging enough to get people to discuss their wishes and values around medical decision making – in fact a recent survey revealed that only 20% of Canadians have engaged in advance medical care planning.[ix] Lawyers, armed with the right knowledge and tools, can be our champions for making sure that client’s voices are heard and the SDMs are properly determined and capacitated. Let’s work together to stop making ‘medical decisions’ in law offices and start informing Canadians about the importance of planning in advance for serious illness.
– Daren Heyland, MD
Professor of Medicine
[ii] https://www.indexmundi.com/canada/demographics_profile.html ; last accessed September 19, 2019.
[iii] Heyland DK, Tranmer JE, O’Callaghan CJ, Gafni A. The Seriously Ill Hospitalized Patient: Preferred Role in End of Life Decision Making. J Critical Care 2003;18(Mar):3-10.
[vi] Heyland DK, Ilan R, Jiang X, You JJ, Dodek P. The prevalence of medical error related to end-of-life communication in Canadian hospitals: results of a multicentre observational study. BMJ Qual Saf. 2016 Sep;25(9):671-9. (PMID: 26554026).
[vii] Tilden, VP, Tolle, SW, Nelson, CA, Fields, J. Family Decision-Making to Withdraw Life-Sustaining Treatments From Hospitalized Patients. Nursing Research: March-April 2001 – Volume 50 – Issue 2 – p 105-115.
[viii] Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256-261.
[ix] Teixeira AA, Hanvey L, Tayler C On behalf of the Canadian Researchers at the End of Life Network (CARENET), et al What do Canadians think of advanced care planning? Findings from an online opinion poll BMJ Supportive & Palliative Care 2015;5:40-47.