Sooner or later, we will all have to deal with the fact that having any progressive chronic disease, such as Parkinson’s, will require us to make major decisions about where we live, how we live and how much help we will need on a daily basis to live our lives the best way possible. As PD takes more away from us, will we be able to stay in our homes? And who makes the decisions?
I just listened to an amazing book titled “Being Mortal” by Atul Gawande. I had downloaded the audiobook because it had received so many accolades and was a best seller. Then conveniently forgot that I had it. The topic was too depressing and could wait. But then my friends started commenting on how good this book really is, so I decided it was time to bite the bullet and finally listen to it. And it was definitely worth it.
Throughout the book Gawande masterfully weaves stories of his patients with the hard realities of growing older and facing hard decisions about their care. The stories serve to illustrate how things can be handled better than they are in most of American society when it comes to aging and dying. We expect modern medicine to extend our lives, regardless of the quality of life. We treat our parents like children, placing them in nursing homes or other facilities, taking their lives away from them. In contrast, the extended families in many other societies care for their elders. The rise of nursing homes in the US gave us the option of no longer having to care for them ourselves, often leading to inadequate care and a terrible quality of life. Nursing homes became places where people went to die, not to live better when they could no longer take care of themselves.
Major changes in nursing homes began with a young doctor, hired to run a nursing home in upstate NY, who found it totally devoid of life. He was sure that something better could be done for the residents. Bringing children, plants and animals into the nursing home, especially 100 birds and dogs, in a hilariously told story, gave new purpose in life for many who had previously found little to live for.
On the opposite side of the country, in Oregon, the first assisted living facility was started by a woman who wanted to create a place as an alternative to nursing homes for her mother. A place where she would have her own small kitchen and bath where she could remain relatively independent, yet with many of the services provided by nursing homes available to her. Both of these visionary providers changed the way we care for our elderly.
Most importantly, Gawande shows that it is essential for us to listen to what those who are dying truly want as life grows more difficult. Shared decision making between the patient, doctor and the family has become much more common. Hear what the patient has to say and the choices you will ultimately have to make for them will become clear. Equally important, he talks about Hospice, whose sole duty is to make life more comfortable for the gravely ill, often increasing their quality of life and sometimes even prolonging their lives.
With his own father dying of cancer, Gawande asked what was important to him to live for after a difficult surgery. His father’s answer surprised him: he could not accept a life as a quadriplegic, he wanted to be in charge of his world and life. Later, after complications during surgery, the doctor came to talk to the family about whether to continue the surgery. What was the greater risk? Continuing the surgery or doing nothing. Gawande’s previous talk with his father had made it very clear how to proceed.
As I was reading this book, I started to think about how all of this would apply to a person with Parkinson’s. Eventually we will have to make decisions about where to live, what type of care is needed, and what decisions the family will have to make on our behalf. And most importantly, when a major medical decision needs to be made, what outcomes would be acceptable for us. Waiting to talk about it is no longer an option. We need to have an ongoing conversation with our families and care providers about our future now, not when it is too late to share in the decisions.