So much of today’s press seems to be about the “right to die” or “dying with dignity” movement. We get caught up in the hyperbole of words like “physician-assisted suicide” or “euthanasia.” I believe that focus misses some very important points that are beneficial to every person who faces death (their own or that of someone they love). I prefer to focus more broadly on the right to decide, the right to participate, and the right to be prepared.
Since no one knows when a personal medical crisis, traumatic accident, or terminal diagnosis will happen, it’s imperative that we begin meaningful conversations with people we love while we’re healthy and able to communicate. It’s important that we speak with our healthcare team (whether that’s our primary care/family doctor or a whole team of specialists) about risks/benefits and options.
Waiting until we’re faced with a never-before-discussed situation is absolutely the wrong time to begin advance care planning or end of life counseling. At that time, we’re forced to make tough decisions in very limited windows of opportunity — when emotions are chaotic and reason is hindered.
Here are some significant arguments from a growing body of research (and from our experiences) promoting the importance of advance care planning. I’ve noted some key phrases in bold font:
- Attending to emotions, understanding their purpose in decision-making, and exploring patient values can help surrogate decision-makers make an “authentic decision … informed by knowledge of the patient’s values and motivated by an intention … that respects the patient as a person”1
- “We must all realize that if we don’t make these decisions soon enough, someone else, often a family member, sometimes a caregiver, will be forced to carry the terrible weight of making these decisions for us”2
- Major stressors for surrogate decision-makers: unsure of patient’s preferences, poor communication by clinicians, insufficient time, and uncertainty or guilt over decisions3
- The better educated family members and surrogate decision-makers are about the needs of the patient, the better they are able to cope with the demands of their decision-making roles4
- Decision-makers express feelings of guilt, doubt or burden related to making end-of-life decisions
- Negative emotions are mitigated when patient’s wishes are known.
We believe there are considerations in guiding successful advance care planning/end of life conversations. Below are 10 such considerations that you might use to begin conversations with people you love:
Caring Choices proposes everyone should have a “right to decide” what type of care they want and when they want it. We also believe that decision-makers have a right to be prepared to step in to advocate for a loved one who can no longer communicate their wishes. Family and friends have a right to participate in planning when a loved one asks them to be a caregiver. Stating that “my family will know what to do” or “my daughter will take care of me” are bold assumptions if you’ve never had conversations with or commitment from those you want as your decision-makers and caregivers. Consider the conversation(s). Then schedule time to have them. It’s your right … and theirs.
Scheunemann, L.P., Arnold, R.M. & White, D.B. (2012). The facilitated values history: Helping surrogates make authentic decisions for incapacitated patients with advanced illness, American Journal of Respiratory and Critical Care Medicine, 186(6), 480-486. DOI: 1164/rccm.201204-0710CP
Thompson, J. & Fry, P. (2012). Call to action: What needs to change to improve care and allow sustainability. In B.J. Jammes (Ed.), Having your own say (c. 16, pp. 231-235) Washington, DC: CHT Press
Wendler, D. & Rid, A. (2011). Systematic Review: The Effect on Surrogates of Making Treatment Decisions for Others, Annals of Internal Medicine, 154(5), 336-346, W-100-W104.
Connor, S.R. (2009). Hospice and Palliative Care: The Essential Guide (2nd Edition). New York, NY: Routledge
© 2015 Caring Choices