Thursday, August 18, 2011

Graceful dying - all is not equal


My dog is dying. When he was diagnosed two months ago with brain lesions, we had an open, practical conversation with the veterinarian about quality of life, palliative symptom management and options for a gentle death, including euthanasia, when the time is right. Humans (with rare exceptions) are not offered these options. A news article in the Albuquerque Journal tells of Dorothy and Armond Rudolph, ages 90 and 93, who decided to choose their own time to die, peacefully and together, by declining food and fluids. The couple first consulted Compassion & Choices, a non-profit organization that focuses on improving people’s rights and choices at the end-of-life. They found out that they were within their legal, medical and ethical rights to fast, knowing they would likely die within ten days. Their assisted living facility responded by calling the police and emergency services, reporting that they were attempting suicide. Three days into their fast the couple received an eviction notice.

From the son’s point of view, “They decided to control their deaths and die peacefully at home as their options were beginning to dwindle…They both knew they didn’t want to endure a lingering decline.”
From the facility’s point of view, “If we see that someone in our care requires alternate placement, medical attention, or a level of care beyond the facility’s capabilities, we have an obligation to notify a medical provider.”

The article was written eight months after the couple’s death. (They died in a rented home, a day apart, about ten days from the start of their fast.) No information is offered about whether or not a medical provider was involved. Was a hospice agency consulted? Would a medical provider sign a certification for hospice care in the setting of a voluntary death without a defined disease process or progression of an identified illness? Would the assisted facility have been willing to work with this couple’s wishes if they had had advance notice and the support of a hospice agency?

Getting old is not for wusses. Most people don’t fear death as much as they fear the degenerative conditions that arise with aging. This couple found a legal, medically ethical, and graceful way to end their lives. Regardless of our own personal responses to their decision, it was their decision. We just don’t have a social or practical medical system that can accommodate their chosen path.

When the ‘time is right’ for my dog to die, I can choose to have him with me at home, I can take him to his dog doctor for euthanasia or she will come to him. My family and I have choices for his graceful way out. Perhaps we can, as a society, find a way to extend similar compassionate and graceful options to humans.

by: Patrice Villars

8 comments:

Teri said...

If I come back in another life, I want to come back as your dog.

Christopher Langston said...

Wow - very thought provoking.

I just don't know how to think through the assisted living facility's eviction.

Was it an appropriate response to a tenant/resident who wanted to do something that violated the institution's values? (e.g., I support your right, but don't want to be involved, so, not here please.)

Or was it a vile NIMBY CYA piece of nonsense?

Caring for people is not for wusses, either.

caringrn said...

They had every right to make that choice. What should have happened is someone should have asked them if they would like to have support from hospice...were their end of life tasks completed? To treat them like valuable humans with dignity....and also, something we forget about all too often: that we can palliate hunger a bit when patients elect this option. What's wrong with a little IM ranitidine, fentanyl patch, or other palliative meds? There are times, when a feeding tube is stopped abruptly for whatever reason, and the patient is left to have severe hunger pains. Several days can pass in that situation before ketosis begins to help a bit. But we often forget about asking about hunger, or giving the patient relief of that during the process, and until dying begins...when hunger and thirst are generally absent. Kate Adamson is a woman who had a stroke and was "locked in" for 80 days. Read her comments on her website and in her books about the 8 days when her feeding tube was stopped, without explanation, and the pain she endured from hunger. She lived to tell us what that is like.

The Zir Effect said...

Beautiful contribution, Patrice.
Eviction from the assisted living facility could have legal ramifications as they were indeed within their rights to choose to withhold food and fluids. My grandmother died that way, in her own home at 95. She "knew" it was time. My mother and aunt cared for her until her death. It would seem that a better/kinder response from the facility would have been to assist them in finding another place to live. Maybe there is more to the story. In any event, I am glad they could have their wishes met in and die within a day of one another.

Your dog is fortunate to have found a home with a heart, surrounded by people who love him. Best to you both.

Kim said...

Although I don't agree with the actions of the ALF, I can understand why they evicted this couple. I work in a LTC facility where it seems like so many decisions are made due to an almost irrational fear of litigation, maintaining the current 5-star rating and the fear of state inspectors. Staff know that a patient is willing himself to die but still ask for me to prescribe appetite stimulants, IV fluids, anti-depressants... and the list goes on. I really don't know if we'll ever see the culture change we so desperately need during my lifetime.

Jonathan said...

Everyone decides how to live. Very few have the luxury to decide how to die. These folks perhaps did it right without requesting a doctors prescription required to die actively.

Patrice Villars said...

Paula Span gets more details on the story here: http://newoldage.blogs.nytimes.com/2011/08/24/deciding-to-die-then-shown-the-door/

Julie, Hospice Nurse and family member said...

The ALF needs education about what an Advance Directive is. Also to understand that once a patient elects and signs a consent form to use the Hospice benefit,THEY control what treatments they will accept or refuse, as is their right within the USA and each state, to accept or refuse nutritional hydration or nutrition, as is their right to have a comfortable death in the place they call 'home.'

Patients choose every day to go seek medical care, or not, to get treatment for conditions, or even a diagnosis, or not. An ALF is a place elderly can choose to become their "HOME."

As a hospice nurse myself, for the past 13 years, I have seen family members thrust their own selfish decisions to prolong life for their loved ones, not grasping the concept of how it can sometimes do more harm than good--fluid overload of the circulating system, malabsorption, aspiration of stomach contents to name a few.

In this particular case, it is not clear what medical conditions this couple had. It wasn't likely fear alone---it was fear based on something else. But had they been 'home' the hospices and ALF's I am familiar with would have supported them and provided for them in any way possible to let them have a peaceful dignified death at HOME.

What a shame that the family was left with disgust for the circumstances that will ALWAYS be associated with their death.