No one wants to consider that they will one day no longer be living on earth. When I give presentations on aging, I take a moment to remind people that they have the time RIGHT NOW to make decisions that they might not be able to make at some point in the future. And I am referring to everything from personal possessions to their end of life care. That end of life care is called advance care planning, for obvious reasons, but so many of us seem to overlook this “gift.”
In ordinary day to day living, we make countless decisions regarding everything from our money to social events to our health. But little time is spent actually deciding on how we would choose to be taken care of if we no longer have the ability to voice this. When we make a will or trust, we are leaving instructions for others on what we want to happen to our money, property and possessions. But what about us; our human body? Anyone can have a medical crisis at any time and there is no better “gift” we can leave to our loved ones than to provide them with instructions on what care we do or do not want.
Advance care planning can help alleviate unnecessary suffering, improve quality of life and provide better understanding of the decision-making challenges facing the individual and his or her caregivers. An advance care plan can be used at any stage of life and should be updated as circumstances change. It is making decisions about the care you would want to receive if you become unable to speak for yourself. These are your decisions to make, regardless of what you choose for your care, and the decisions are based on your personal values, preferences, and discussions with your loved ones.
There is a certain “lingo” that accompanies this decision-making and, as such, should be well understood before undertaking these documents. There are two types of advance directives which can standalone or be combined: advanced directives and Physician Orders for Life Sustaining Treatment (POLST). While they are different, they can and do work in tandem.
There are two types of advanced directives, living wills and health care proxies. Again, these can work independently or can be combined.
Living wills identify types of treatment someone wants or does not want if they become terminally ill or are in a vegetative state, meaning that have no ability to make decisions. A health care proxy (aka durable medical power of attorney) is created so that someone can choose a specific person who can make medical care decisions for them if they become unable to.
POLST, on the other hand, is NOT considered an advanced directive document, but a specific standing medical order and is part of a carefully crafted decision-making process between the person and the person they have identified as their health care professional (HCP). There are specific state regulations that apply to the use of this form and these regulations and statues must be adhered to by all parties.
The HCP acknowledges the patient’s specific diagnosis, prognosis and treatment options (including the benefit and liabilities of each). The patient shares what their personal goals of care are through their own beliefs and values. Together they make decisions about what treatment will and won’t be used. This document is ordinarily used when the HCP recognizes that the patient most likely has less than a year to live.
While both of advanced directives and POLST are completely voluntary, in some cases the advanced care directives do not go far enough to ensure that the goal the patient wants to achieve will be honored. Hence the use of a POLST. However, there are acknowledged criticisms of the POLST directive:
Although POLST may help avert unwanted medical intervention under a narrow set of circumstances, it may actually curtail patient-centered decision making when applied more broadly. Standing physician orders dictating future treatment decisions are appropriate only if preferences are stable over time and across foreseeable clinical contexts.
The biggest reproach comes from the fact that POLST is extremely context-specific, meaning that it is designed to be followed for specific health states. Unless it remain fluid and is updated as the health state changes, it is not being used as intended.
Despite recommendations that POLST be revisited with changes in clinical status, there is no mechanism for assuring that this is done, particularly after acute health changes. Although the same criticism might be applied to advance directives, POLST is different because it constitutes durable medical orders for which the default response is to obey the orders, rather than to first confirm their continued relevance.
How and what forms you use is obviously a highly personal decision. But the biggest mistake that can be made is not using any of them at all. You are then leaving the burden of such decisions to family members, health care professionals and others who most likely are not aware of your wishes and desires and will be forced into making those decisions on their own.
Many states in the U.S. have their own advance directive forms. Your local Area Agency on Aging can help you locate the right forms. You can find your area agency phone number by calling the Eldercare Locator toll-free at 1-800-677-1116 or going online at www.eldercare.gov. Canada has similar forms and regulations. See http://healthydebate.ca/2013/05/topic/community-long-term-care/advanced-care-planning. The UK and other countries have been debating the POLST objectives. (See www.nhs.uk/Planners/end-of-life-care/Pages/planning-ahead.aspxand www.nhs.uk/Planners/end-of-life-care/Pages/planning-ahead.aspx\.)
Advance Care Planning: Ensuring Your Wishes Are Known and Honored If You Are Unable to Speak for Yourself. 12 December 2012. Center for Disease Control: Critical Issue Briefs. Retrieved from https://www.cdc.gov/aging/publications/briefs.htm
Vanderbroucke, Amy et al. (26 September 2013) “Advanced Care Planning for the Seriously Ill.” Retrieved from http://polst.org.
Kendra, A. Moore, Emily B. Rubin, Scott D. Halpern. “The Problems with Physician Orders for Life-Sustaining Treatment.” Journal of the American Medical Association. JAMA 19 January 2016. Web. 1 October 2016.
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