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How much care is too much care? It’s an impossible question to answer for we are all under different circumstances and were brought up with different family expectations and various religious traditions. Yet, we all have a sense for ourselves as to how much care we would want if we were informed that our condition was highly unlikely to improve. One person’s time not to fight is another person’s starting place, but no matter where you land on the topic, we can learn from data and real life scenarios to help us form an opinion for ourselves and start a conversation with our loved ones. For nothing is more generous than a person who clearly expresses their wishes for the end of their life.
Kindful’s very own Chief Clinical Officer, Bob Parker, PhD, DNP, RN (Yes, that makes him a Doctor, Doctor, Nurse) in his PhD thesis wrote about Burden v Benefit and how we can recognize the risk of “Complicated Grief” driven by the risk of “Care without Benefit”. The trajectory of any given disease can vary but all of us will have an end point. Based on our trajectory we will receive traditional treatment plans that tend to value curative measures over comfort measures. But how does a family know when traditional, curative treatment plans could potentially do more harm than good? When is the right time for patient education for alternatives? My feeling is that it’s never too early to educate people that at the end of life they will have a choice.
When facing life threatening, rapid decline or critical care needs it’s my feeling that a second level of communication and education needs to be started that gives voice to an alternative to heroic end of life care. If I told you there was a way to both extend life and to increase the quality of life would you want to know more? Well there is and it’s called hospice. For people who appear to be on a trajectory of life that would indicate they have six months or less to live, there is another alternative. And I firmly believe that each individual and their family deserves to be educated on what hospice is and what it is not so they can make their own choice.
I recently watched the movie “Other Side” which follows a dynamic woman who finds out she has incurable and inoperable cancer. Instead of throwing a series of “Hail Marys” she elects to spend the rest of her life in the place that she loves, surrounded by the people and things that she loves. She understood her situation and chose comfort over cure. But what was the result? She enjoyed months of high quality living in her home with her husband and children. She completed a non-profit project called “Wind Phones”. She wrote letters to the dozens of friends and family that impacted her life. What she did was live. Live every day with gusto. And when the inevitable came she had a plan. A plan to deal with pain and discomfort. A plan so her family didn’t have to guess as to her wishes. A plan that was honored by her family that truly made the end of her life as beautiful as the beginning.
So how much care is too much care? That’s a question for you to decide but allow me to suggest that we all start by understanding our alternatives including hospice.
