Personal directives – a trigger for a good conversation

Some directives raise more questions than they hope to clarify

- Design Pics photo The medical community and the patient need to discuss the patient's intentions in his or her personal directive.

By JAN SCHIMPF
and GORDON SELF
Special to the WCR

The second reading of Bill 40, the Personal Directives Amendment Act, 2007, earlier this month in the provincial legislature as well as a recent article in the Western Catholic Reporter ("Personal directive gives control over medical treatment," WCR Oct 29) has prompted us to add our perspectives from a clinical point regarding the value of, and limits to, personal directives.

A personal directive is a written set of instructions regarding a person's health care wishes should the time arrive when he or she may lose the capacity to speak for him or herself. The personal directive may address a number of specific wishes regarding health choices, name a substitute decision-maker (known as an agent), or do both.

Appropriate medical treatment

As members of the Caritas clinical ethics committee, we are often involved with cases when a patient lacks capacity and a personal directive is enacted. From our perspective, we certainly view a personal directive as a valuable document to inform the decision-making process and to facilitate treatment options most in line with the patient's stated wishes, needs or values.

However, it is important to recognize that, not unlike dealing directly with a fully competent patient speaking for him or herself, the appropriateness of the available treatment options have to be evaluated in the context in which the patient finds him or herself, and with consideration regarding the overall goals of care.

For example, a person could verbally state or document in a personal directive, requesting "no tubes whatsoever."

Painless insertion

But by itself, what do no tubes mean? The relatively painless insertion of a nasogastric tube at the bedside for a short duration of six to 12 hours to relief nausea following routine surgery is a very different scenario than surgically inserting a tube through the abdomen of a patient with end-stage Alzheimer's for an indefinite period of time where burden to the patient is certain and benefit highly questionable.

Yet, both can be equally interpreted as meaning "no tubes." As caregivers, we need to have further understanding as to what the person had in mind when they wrote their personal directive and what was of value to the patient that they were seeking to preserve and uphold.

While we applaud the legislative amendment to the Personal Directives Act and the legal community encouraging their clients to draw up personal directives, we also maintain that the written document never replace having the necessary conversations with others if at all possible.

When a patient presents their personal directive upon admission to the hospital or is flagged on their existing health record, we in the medical community see this as a trigger to sit down and go through the document with the patient to understand what they intend.

Time for discussion

Some documents are ambiguous and raise more questions than they hope to clarify. It is an opportunity to have a values-based discussion with the patient about what is and what isn't important to them so no one is in doubt.

Similarly, it is important for makers of personal directives to have those necessary conversations with their agent if they choose to name a substitute decision-maker, or with their family and physician. This will help them better interpret the person's needs when asked by the medical team whether the patient really wants "no tubes" in this instance.

Knowing that no one document can ever capture every imaginable medical scenario and complexity of treatment options, it is at least helpful that the person attempt to clarify their values - that is, what they see as important. As a Catholic organization, Caritas Health Group follows the Health Ethics Guide, published by the Catholic Health Association of Canada and approved by the Canadian Conference of Catholic Bishops.

The Health Ethics Guide affirms that the patient receiving care is the primary decision-maker and that the needs, values and wishes of the person receiving care be given primary consideration.

Needs, wishes, values

While our life circumstances may change from one day to the next typically our values do not. From our experience as clinicians, personal directives that attempt to put forward the patient's "needs, wishes and values" may be more helpful than a list of what tubes, or mechanical supports, or types of drugs a person may or may not want.

If the agent and health care team are reasonably certain what the patient considers of ultimate value, it is a lot easier to collaborate on discerning what type of intervention is appropriate given the unique clinical circumstances, and with a view towards the overall goals of care.

We must remember that fulfilling the role of agent or speaking as a member of the patient's family or health care team that it is important we ask ourselves whose needs we are meeting. We might think it is beneficial to continue a course of treatment but ultimately it is not our decision to make.

It is the patient's wishes, either stated by the person themselves or expressed through a personal directive that matters. The patient may find some interventions overly burdensome and will decide to forgo further treatment (see articles 89 and 92 of the Health Ethics Guide), which is entirely ethical.

Benefits and burdens

But does that mean every statement in a personal directive must be honoured? In our experience this is one of the most confusing matters regarding these documents requiring ongoing education. The Health Ethics Guide is clear that "there is no obligation to provide treatment when it is of no benefit or when the burdens resulting from treatment are disproportionate to the benefits hoped for or obtained" (article 95).

We would also add there is no obligation to provide treatment when the person's expectations exceed the available resources, or conflict with the mission of the organization (article 41). For example, a patient may duly note in their personal directive requesting to be euthanized, but this does not mean it is possible, appropriate or legal.

The ethical integrity of the organization and the clinical judgment of the health care team must also be honoured. No personal directive obligates a doctor to perform bad medicine.

Health care decisions

Health care decisions are never just medical decisions. Nor are they simply isolated, autonomous choices without any connection to community.

Rather, from our experience, the best health care decisions involve conversations with patients about their needs, wishes and values, while, at the same time, are based on a clear understanding of the facts regarding prognosis, risks, benefits and alternative courses of treatments, so that together with the support and input of the health care team, the patient can make a fully informed and meaningful decision.

When such conversation is not possible or practical, as during an emergency setting, a personal directive can be a tremendous help with clarifying what a patient would want, based on their expressed values.

But this assumes the person shared the contents of their personal directive with their agent or family ahead of time to clarify their meaning.

From our experience, this is when personal directives work well. Communication is a two-way street. Even drawing up of a personal directive should be a trigger for a necessary and candid conversation with all the right people.

For more information regarding Bill 40, see: www.assembly.ab.ca/bills/2007/pdf/bill-040.pdf. Or see the final report and recommendations to the Legislative Review to the Dependent Adults Act and the Personal Directives Act: www.seniors.gov.ab.ca/services_resources/opg/leg_review/FinalReport.pdf.

(Jan Schimpf is patient care manager, ICU, Misericordia Hospital, Caritas Health Group. Gordon Self is vice president, mission, ethics and spirituality, Caritas Health Group.)

Copyright © 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009 -- Western Catholic Reporter