By Susan Baida, Co-founder of
http://www.ecarediary.com/
End of Life planning is very personal, emotional and controversial. When my uncle suffered from a pulmonary embolism that left him in an irreversible coma, my mother was determined to keep him alive in hospice care. He was breathing on his own, but was diagnosed as brain dead. The damage caused by the lack of oxygen flow to his brain was too great. She couldn't bring herself to stop the intravenous feedings which would result in him dying within a few days. So he was kept alive with daily feedings, baths and massages. He lasted this way for 20 months until his death in May 2008.
My uncle did not have advanced directives which are documents such as a living will and healthcare proxy that provide clear direction of a person's wishes should they become incapacitated. He was only 56 years old and didn't think about this type of preparation because he was relatively healthy beforehand.
I think most people are like my uncle and don't think about getting these documents until they are in early stages of a long term disease. My father-in-law is a perfect example.
When my father-in-law was first diagnosed with Parkinson's disease at age 77, it appears he began immediate preparations with his lawyer. After having the documents drafted and signed, he told my husband, John, about them and where they could be found. While John did not want to think about end of life care for his father, he was both surprised and impressed by his father's level of preparation and detail. His healthcare proxy identified John as having power of attorney should he become incapacitated. His living will stated explicitly that he did not wish to be kept alive if the medical diagnosis indicated no hope for his full recovery.
On July 24, 2007, my father-in-law, at age 83, suffered from a stroke that left him in a comatosed state. He was able to breath on his own but needed a feeding tube to get nutrition. The doctors conducted various exams. We learned that he not only suffered from a stroke but that he had advanced cancer which had not previously been diagnosed. The doctors gave the family the diagnosis that his conditions were irreversible and that he would pass away within 6-8 weeks if maintained on life preserving devices.
John and the family had little choice but to honor my father-in-law's wishes as outlined in his advanced directives. One day later, he was taken to a hospice where he was kept "comfortable" with pain medication and warm blankets. Three days later, he passed away peacefully and with dignity surrounded by his family.
Both my uncle's and my father-in-law's deaths were incredibly tragic and painful to witness. However, I think the decision-making process was made easier on John's family because my father-in-law documented his wishes which relieved them from the burden of these difficult end-of-life decisions.
The lesson learned here is to prepare for end-of-life care with advanced directives. I don't think it is ever too early because, with the unpredictability of life, we can become incapacitated at any age. In fact, my husband and I, despite being in our 40s, have completed advanced directives in case something should happen to us and we become incapacitated and unable to execute our wishes.
Visit eCareDiary's Legal Documents page to learn more about advanced directives.
This morning on WPR (Wisconsin Public Radio), there was a fascinating discussion about how we can make the most of our remaining days, weeks, or years of life. Joy Cardin spoke with Dr. David Casarett, associate professor of medicine, Division of Geriatric Medicine, and Director of research and education Wissahickon Hospice, University of Pennsylvania, who is the author of "Last Acts: Discovering Possibility and Opportunity at the End of Life."
Dr. Casarett shares stories about the terminally ill patients he works with and how they discovered possibility and opportunity at the end of life. The conversation was primarily focused on patients who had received news that their remaining time on earth was limited; however, as one caller pointed out, in essence, everyone's time on earth is limited. It got me to wondering why we might only consider all of the things we love and desire to do when faced with a terminal diagnosis, why more people don't live their life this way regularly? We get so caught up in our day-to-day lives that we often take for granted that life is short.
The discussion also turned to the issue of the importance of advance directives and making our wishes known while we are still able. Why not do all that we can to "go out" on our own terms? This can often be difficult to think about, but very important. Just as we mentioned in a previous entry, we all want to remain in control and continue having our independence as we age; making our wishes known in advance is a great means of ensuring control, even when we may not have much (physically/mentally) when the time comes.
And I'm not just talking about the elderly or those who are terminally ill. We should all take the time to evaluate our values, our priorities, our passions and our purposes in life and take every possible step we can to ensure that these things are woven throughout every facet of our lives, from beginning to end. What do you think?
After battling breast cancer for well over two years, my aunt was told by her doctors that not much more could be done and the focus of her care would shift from treatment to management. My family reluctantly arranged in-home hospice care for her, but with my uncle working overtime to feed their two children and pay for her mounting medical bills, it soon became obvious that they needed
more support. According to the
National Hospice and Palliative Care Organization, it is typical for a family member to serve as the primary caregiver to supplement regular visits from hospice staff. So what happens when family members are thousands of miles away? Such was the case with my aunt and her family.
Millions of people receive hospice care each year, and I can't even begin to imagine how many of these families must be going through the same things my family experienced. When family caregivers can't be with their ill loved one due to work or simply because they are exhausted and need a break, families need to know that they have options. As you can imagine, the importance of ensuring that my aunt was being taken care of outside of hospice visits was insurmountable. She had been such a trooper through the seemingly endless number of hours of treatment; it broke our hearts that my uncle had to feel as though he was choosing between my aunt and paying the bills each time he left for work.
When we were able to arrange for a supplemental caregiver to be with my aunt when hospice left-to help her, to spend time with her, to ensure she was comfortable-a weight was lifted from our shoulders. While it didn't change the fact that we were thousands of miles apart, we found some solace in knowing that she was being cared for, even when other members of my family were not able to be with her.