Lessons from a good death
(MoneyWatch) Welcome back to my second post on lessons learned from the life and death of my 92-year-old mother. This post is a story about a good death and how it came to be.
It seems to me that dying ranks up there as one of your most important life events, right alongside being born, getting married or meeting your life partner, and having children. Most likely you put a lot of time and effort into making these other life events positive experiences (with the possible exception of being born). So it only makes sense to put some time and effort into planning your passing to be a positive experience for both you and your family.
If you're interested in learning about a good death, I heartily recommend you read Dr. Ira Byock's book, "The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life." Byock is a palliative care physician who has decades of experience counseling terminally ill patients and their families. His book had a profound influence on me, and it helped our family navigate the challenges we faced with my mother.
According to Byock, the vast majority of Americans say that they prefer to die at home, in familiar surroundings and cared for by their loved ones. Yet more than 75 percent of Americans die in a hospital or nursing home, often alone at a time when their need for comfort and emotional support may be very great. Nearly half of the people who die in hospitals spend their last days in intensive care units, hooked up to machines and feeding tubes and unable to communicate with their families. It costs a lot of money to die this way, a cost borne not just by Medicare and the insurance companies but by families as well, who will most likely incur substantial out-of-pocket expenditures.
It takes a concerted effort to die at home. You need to overcome a strong cultural bias and medical preference to prevent death and prolong your life at any cost, in spite of overwhelming evidence that eventually everybody dies at some point. The automatic reaction in most end-of-life situations is for medical caregivers to do something, anything to keep you going, and my mother's situation was no exception.
My mother stated a strong preference to stay at home. Three months earlier, she had spent more than a week at a hospital, and in her fragile state she was nearly killed by the lack of sleep, bad food and constant testing and interruptions from well-meaning medical professionals. We were all convinced that another trip to the hospital would be her last.
My sister, brother and I all agreed to honor her wishes to stay at home. Fortunately she wasn't hooked up to life support or any other medical intervention that would prevent her from staying at home. When the end was near, her doctor and caregivers repeatedly asked us to admit her to the hospital "for observation." We asked my mother again and again if she wanted to go to the hospital, just to be sure, and she was adamant that she wanted to stay at home where she was comfortable and cared by her family and in-home caregivers.
The lesson here is that you need to express your desires clearly, repeatedly and in writing. You need to have all your close relatives on board with this decision. Your family needs to present a united front to the doctors and caregivers.
This is not to say that the doctors and caregivers are the bad guys in this situation. Over the past two decades of my mother's life, modern medicine intervened at key times to keep her alive and well, enabling her to be around longer to enjoy her children and grandchildren.
Medical professionals are trained to preserve and prolong life; it's ingrained in their DNA. It just so happens that their training may be at odds with your desires at the end of your life, and you'll need a concerted effort to carry out your preferences.
Hospice care, which is intended to make you comfortable without trying to cure your terminal condition, was a godsend for my mother. Her hospice workers were able to manage her pain, which is a critical component of hospice care, as is any other form of care that makes you comfortable. (There are many misconceptions about hospice care; here's one link that explains what hospice care is and isn't.)
If you don't want to stay at home, you can choose to go to a hospice facility. My father died at a hospice facility that was peaceful and comfortable, and that allowed our extended family to be at his side when he passed away. In both my mother's and father's situations, the hospice doctors and nurses provided needed care to make them comfortable and offered valuable guidance to the family. In my mother's situation, the hospice doctor and nurses came to her house to administer their care. Hospice care is an allowable expense that is reimbursed by Medicare, whether provided at home or at a facility.
I know that every situation is different, and not everybody is in a position -- or even wants -- to take the steps I'm advocating in this post. I'm also not judging anybody for their choices; dying is obviously a very personal affair for the person who's dying and their family. I'm just giving you some options to think about.
My mother died in the bed and bedroom that she shared with my father for more than 50 years, surrounded by her family. Her room was a peaceful haven, a shrine to what mattered most to her -- dozens of pictures of her children, grandchildren and great-grandchildren hung on the walls and sat on her dresser. In the end, she simply stopped breathing without any visible distress.
They say that hearing is the last sense to leave. I choose to believe that the last things my mother heard as she floated away were all of us calling out to her "Godspeed," "Say hi to Dad" and "We love you." It can't get any better than that.
