Monday, October 13, 2008
(See standard disclaimer at the end RE: Hastened Death)
I wanted to highlight some of the editorials and articles regarding the upcoming Washington State I-1000 Death With Dignity Act. (You can get some basic info from my previous post, if you are not familiar with the proposed legislation)
The issue of hastened death and specifically physician-assisted suicide is important for the palliative care community as it highlights many of the concerns we (legally) deal with on a daily basis: autonomy, adequate symptom control, the personal nature of suffering, conflicting values among patient, family and staff, conflict of faiths, the loss of control in the dying process, the possibility for personal growth during times of crisis. These concerns are in a complex dynamic in palliative care and so the many heated arguments about hastened death highlight the turmoil involved in caring for dying patients. This allows the general public some insight into what hospice and palliative care teams would call Wednesday afternoon.
Dan Savage wrote an editorial last week titled, "In Defense of Dignity
I Hate to Play the I-Just-Watched-My-Mother-Die Card—But, Um, I Just Watched My Mother Die." Please go read it then come back here. Pallimed linked to his eulogy for his mother last April. (An excellent read with great insight into family loss.)
His piece focuses mostly on control over the dying process and the issue of choice. I think the selection of the word 'choice' is important and I am surprised more has not been made of this initiative from the national press or even medical blogs. This would seem to be a very polarizing and political issue which would have have the press salivating, no?
My stepfather would rush her to a hospital, and she would come home a few days later having accepted some previously feared development—being hooked up to an oxygen tank, having to use a walker—as her "new normal."I appreciate his use of the phrase 'new normal' as this encapsulates the increasing medical support when one faces declining health and the fact that patient and family often change what is an acceptable state of health until there is some threshold. This line in the sand is different for every patient and every family. It is even different for the same patient at different times in their life. 'Past me' may not have chosen 6 years on hemodialysis for 'present me', but 'present me' thinks it is just fine and would not mind if 'future me' can claim 10 years on dialysis if 'future me' is still alive.
Savage goes on to comment on two widows who have opposing views on physician-assisted suicide:
The woman voting for the initiative—whose husband died of brain cancer—wants terminally ill people to have a choice at the end of their lives, a choice to end their suffering and hasten an inevitable, rapidly approaching death. The woman voting against the initiative wants—well, she wants what we all want. She wants to have a good death, a peaceful death, a death like the one her husband, um, enjoyed.Cynical, yes, but some people can have a good and even great experience while dying. But I can't Polly-Anna everything and say that is possible for everyone. The medical aspect of dying is just one part, and some might say a small part of making sure dying is good and peaceful. If we (as individuals and as a society) look at death as a significant event in life much like being born, hitting puberty, your first kiss, getting a first job, getting married, having children, getting fired, becoming a grandparent. There are aspects of celebration and sadness in each of these as there is in death. For all of these events the balance sways towards celebration when one is adequately prepared and supported. Same as in death. If one has not made some initial thoughts about the 'inevitable' end of one's life and got the right people in place to help, it is likely going to turn out poorly. Palliative care and hospice can help make great advances in both of these areas but a lot of it has to come from the person within.
Don't we all want that kind of death? Wouldn't it be wonderful if each of us could enjoy a Hallmark death? Wouldn't it be ideal if each of us passed from this life into the next—aka "the void"—enveloped in the love of good caregivers and under the care of competent "pain management" professionals? But not everyone is so lucky. Some of us have to endure deaths that are gruesome and protracted and excruciatingly painful, deaths that involve pain that cannot be "managed," deaths that our loving caregivers can only stand helplessly by and witness.So what do we as a society do about the one's who are not prepared and do not have the right support in place? Well an easy fix is to ensure equal access to competent pain management palliative care professionals. That is a pretty good way to avoid "gruesome" and "excruciatingly painful" deaths. It does nothing to address the suffering of time as one waits for the hour of their death. Waiting and suffering are doppelganger's and if that is the core issue of suffering as it may be for some patients and likely many more family members, there little to fix that except the legalization of hastening death via medical means. The only 'cures' I know for suffering from time is helping people find some meaning in the time and to help bring some grounded perspective to the hours that feel like days. What surprises many people is that dying takes a while. Some of the most difficult conversations in palliative care center around, "Why haven't I died yet?"
...a doctor pulled me and my stepfather out of my mother's room. They were out of options. Nothing more could be done. Her battered lungs were failing; one had a widening hole in it. Amazingly, the doctor didn't say, "It's over, this is it." He laid out the facts and we stared at him dumbly for that world-without-end moment, and then one of us—my stepfather, me, I don't remember—finally said, "So this is it?"
The doctor nodded.
Ugh. Do doctors still communicate like this? I guess so. The above exchange combined with other statements in the editorial leads me to believe his mother did not receive any services from a palliative care team. How a medical team performs around a dying patient influences the perception of the family in so many minute ways. Remembering family members names, getting them something to drink, asking them about fond memories, being present when there are tough conversations, coming back to check in even when you know don't have to. These all help and they are much more than doing nothing.
So if Dan Savage sees this as modern care of the dying, then I can see his stance supporting hastened death and even feel it is justified. If...that is all we had to offer. But it is not. Palliative care is a growing field spurred by demand from families and patients and the health care community to make sure situations liek these do not happen. Death is tough but with adequate preperation and support it can be an amazing experience. I realize that approach is not for everybody and some people would like a quick, painless, death with no worries about 'lingering.' But to decide to make hastened death available to all requires a large civil discussion, and I wish this state intiative had a broader audience so palliative care could have a large educational platform. So there is my two cents.
(My Standard Disclaimer: Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine.)