The anniversary of my mother’s death back in 2009 was this week. She died just a month after turning 89. While I knew she was failing, it wasn’t until I received the call from the skilled nursing facility letting me know that she maybe had one or two more days that the reality of what was happening actually sunk in.
I did make it in time to be with her in her last hours, but I was in too much shock at the time to do much more than collect her things from the skilled nursing facility where she had been for several years, check in with the funeral home, and catch a flight back home. It was not how either of us had envisioned her passing or her being laid to rest, but it was a good death.
This week, my West Coast Mother died, having just turned 91. Unlike my mother, up until literally just a few weeks ago, she was puttering around her home of 60 years, caring for two dogs, and living life on her terms. She had a fall, broke some ribs, and during all of this, it was discovered that she had Stage IV cancer throughout her body. She went home on hospice, and was lovingly tended to by her two daughters and son-in-law. She also had a good death.
The Inevitability of Death
So many people I know tell me, “I’m not afraid of dying! I just don’t want to linger.” Quick and painless! And, that is possible in this day and age. But it presupposes you or I are in charge. And I strongly suspect that there are energies at work in this world that carry far more influence than my wants and wishes.
While the human lifespan is growing longer, the goal of immortality continues to be out of reach. Those of us who are carbon-based life-forms seem to come pre-loaded with a recall date. And when our time is up there apparently is no appeal. So where do you go for a good death when you want to die or are dying? There are several developing trends that are worth your while to be aware of.
Healthcare, Palliative Care, Hospice Care
Our healthcare system is focused on keeping you alive using all possible measures unless you declare in writing you have other wishes, or until a terminal illness or death is immanent. These services are typically provided in a hospital. The unquestioned assumption is that you want everything possible done to keep you alive!
Palliative care, on the other hand, focuses on managing quality of life, and may include interventions designed to ease pain, assist with nutrition, or ease emotional or spiritual distress. It can be an on-again/off-again service, especially if the medical issue is chronic but not terminal. These services are typically provided in a skilled nursing facility, although they may also be provided in a hospital.
Hospice care, by definition, requires that a medical professional has determined you have six months or less to live. Here the goal is to manage your pain, ease discomfort, but not impede the course of death that your body is taking. Services are typically provided in your home, but may also take place in a dedicated hospice setting (e.g., Zen Hospice Care) or skilled nursing facility, or even the hospital itself.
The Growth of Hospice
In every culture there have always been skilled and caring attendants, primarily women, who assisted in easing the suffering of those in the dying process. This tradition was carried on through the modern hospice movement. Its origins can be traced back to England in the late 1960s.
It quickly made its way over the Pond. Medicare had yet to be signed into law, and even after 1965, it took another decade for Hospice to be considered for inclusion. But once it was included as a covered service by Medicare in 1983, it grew into what today are considered essential services for the dying.
Death Doula Movement
Another movement not yet as familiar as Hospice, is the death doula movement. While Hospice has become an essential part of most community healthcare services, death doulas remain on the periphery. The death doula movement finds it’s modern roots in turn of the century (2000) New York City Medical Center, where volunteers were paired with terminally ill patients. Practitioners perform a large variety of services, both before death and after, that help the dying person as well as their family.
The roll of the “doula” or “midwife” is to accompany and support the dying person and his/her/their care team through the death process. This typically involves creating death plans, and providing spiritual, psychological, and social support before and just after death. Their role can also include more logistical activities, helping with services, planning funerals and memorial services, and guiding mourners in their rights and responsibilities.
The Discomfort of Where We Die
To many of my generation who were raised with TV, we understand the sounds of the hospital patient’s room: we can hear the hospital PA system calling a code or demanding a nurse show up at someone’s bedside, we follow the steady beep of the monitors until the heart stops, then anticipate the steady monotone until the machine is unplugged. Death has occurred.
But this is not what it is really like. Today’s health care facilities are computerized, mechanized systems designed to monitor patient vitals but also track revenue and capture claims. While still staffed by dedicated humans, the machines are the primary intervention in patient care.
Can you blame a person for wanting to die at home? It is easy to understand the yearning to be in familiar surroundings, perhaps with pets, family, and friends at hand, able to control sounds, and smells, and light.
Where Do You Want to Die?
I can say with certainty that I don’t have a single friend who has ever said to me, “Take me to the hospital to die!” It’s actually the thing that fills most of us with dread!
When you think about this, it makes sense: hospitals are where you go to get better. Yes, many people do die there, but the focus of care is to return you to life. Yet, the sad statistic is that around 80% of us will die in a hospital.
And, for those of us who want to die in our own bed in our own home, well, the average length of time folks are on hospice is less than a week. Of course, there are exceptions to this – Jimmy Carter being the most famous – but I am saddened that more people don’t know what can be done at home and how it can make the last days of life easier and death better for all.
Advance Care Planning
Not surprisingly, talking about dying is a bit uncomfortable. Discussing it with your family, while essential, is frequently awkward and more often than not, avoided. I encourage you, however, to have that difficult conversation.
If you are looking for help with this, call your local hospice or Google “death doula”. For more information on Advance Care Planning, you really should call an expert. May I recommend Taylor McCandless, MSW? Email her at McCandlessMSW@gmail.com for more information. She can help you with the paperwork and more importantly, the essentials that need to be addressed.