If you were incapacitated, do you have plans in place for what level of care you would want? Marie-Eileen Onieal encourages clinicians to discuss end-of-life care not only with their patients, but also with their own families.
The past year has been quite a roller coaster ride for many of my friends and their families. Several were caught in the throes of Hurricane Sandy and spent days without power and water; many lost their homes and possessions. Others dealt with the loss of a parent or sibling (unrelated to the storm). We, as a nation, faced the unimaginable tragedy of the violent death of children at the hands of a gunman.
While we singularly or collectively grieved these losses, many of us reflected on the reality that our time here on earth is limited. And that started me thinking about death and dying and how we deal (or not) with that juncture in our lives. When it comes to dying, we are often ill prepared for this part of life’s journey. When we are young, we have the misconception (wonderful though it may be) that we are invincible and immortal. We sail through our days seemingly without a care in the world, believing that we will live forever. But, alas, at some point we face the reality of life, when we witness or experience the death of a loved one. And unfortunately, many are left with the responsibility to deal with end-of-life decisions, without ever having had the discussion of what the person wanted in regard to this process. Even as I write this, I am counseling a neighbor whose 78-year-old husband—suddenly and seriously ill—is now in a drug-induced coma. He has a chronic illness, but they never had the conversation.
There is a lot to consider—and tackling the question is difficult, because much of what needs to be identified or clarified is a sensitive subject. Many are not comfortable asking for or sharing information considered very private. But it is important that our wishes are known, so that in the event we cannot act on our own behalf, our preferences for care and treatment are respected. Moreover, we as heath care providers must embrace that Primum non nocere(First do no harm) might include not initiating treatments in an attempt to prolong life when the outcome is inevitable.
Health care providers have spent their careers dedicated to preventing or treating illnesses and eliminating suffering. Advances in technology have allowed us to prolong life. However, many of these advances do not improve the quality of life; rather, they often only delay the process of dying. It is important that we understand which and how much of these technologies our loved ones (and we ourselves) want utilized, or discontinued, when our disease or age has reached the point when it is time to realize our end is near. But the time to discuss and plan for that phase of our life must occur long before the crisis hits.
End-of-life planning is not a new concept. Since the 1980s, the Agency for Healthcare Research and Quality (AHRQ) has both funded and supported dozens of research projects on the topic of end-of-life care. The research funded by AHRQ indicates that many people have not participated in advance planning, although they are interested in and willing to discuss end-of-life care.1 Worse yet, in many instances, researchers found that care at the end of life sometimes appears to be inconsistent with the patient’s preference to forgo life-sustaining treatment, and patients may receive care they do not want.2
In 1997, the NIH designated the National Institute of Nursing Research (NINR) as the lead institute for end-of-life research to advance the science of palliative and end-of-life care and to lead the way in addressing some of the most critical challenges in clinical care.3 This is further evidence that end-of-life care is an important topic to be discussed, and we, the health care providers, need to initiate the conversation.
The conversation is not reserved for the terminally ill; we must also discuss plans with those who have a chronic illness and even with those who are in “perfect health.” These plans, also known as advance directives, can allay many of the anxieties that patients and families have regarding what to do in the event the patient cannot speak for him- or herself, and instill confidence that the wishes of the patient will be honored.
Advance directives are not reserved for the old and infirm. All of us must plan for the unexpected—the sudden life—threatening illness or injury or freak accident—that leaves us unable to communicate what treatments we want or do not and when we want treatments discontinued. Initiating the discussion is not easy for some. For others, when we see or hear about a tragedy that leaves someone paralyzed or in a coma, we are quick to voice what we would want in a similar situation. That is the perfect lead—in to the discussion regarding our wishes. A structured process for an end-of-life discussion has been outlined by AHRQ researchers.1 Theirs is a simple five-step plan:
1. Initiate a guided discussion.
2. Introduce the subject of advance care planning and offer information.
3. Prepare and complete advance care planning documents.
4. Review the patient’s preferences on a regular basis and update documentation.
5. Apply the patient’s desires to actual circumstances.1
(A detailed discussion of these steps can be found at www.ahrq.gov/RESEARCH/endliferia/endria.pdf.)
Now is the time to assist friends, family members, and your patients in discussing and documenting their plans. Take the time to document your own advance directives. Let your family and your health care provider know what you want, and have it put in your health record. Review it annually, in the event that there have been changes in your family or in technology. Do not miss the opportunity to let your family know what you want.
Do you have a plan in place? Share your thoughts by emailing NPEditor@qhc.com.
1. Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018.
2. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? J Am Geriatr Soc. 1997;45(4):508-512.
3. NIH National Institute of Nursing Research. Spotlight on end-of-life research. www.ninr .nih.gov/researchandfunding/spotlight-on-end-of-life-research. Accessed January 22, 2013.