Dying with dignity?

death with dignityWhat a strange phrase, death with dignity. Do we need to say life with dignity? (How many things that we do in life are not dignified, but are still a part of living!) I’m sorry to let people in on the secret, but so much of the end of life is not very dignified, not what I have observed. What is dignified about laying in bed, having someone clean you and turn you, and being unable to answer the insipid remarks some people will make at your bedside?

I worry sometimes about the verbiage people choose, but I do understand the concept. No one wants to be unable to communicate and be at everyone else’s mercy, (and what is done to you no longer in your control). Loss of control, fear of being done to, reverting to our infant state, having pain and suffering unalleviated, outlasting our bodies and burdening our loved ones with the physical care, I believe these things are what prompt most people to seek the death with dignity option.

I have to tell Carol’s story to give you a glimpse of what is feared. Carol was nearly eighty when she received a cancer diagnosis with the news that surgery was not possible, and she decided to move near her adult children to have her last few weeks or months, whatever was left, spent with them. She told me right away that she did not want to be a burden to them, and she had no intention of having them take care of her when she couldn’t take care of herself anymore. I remember sitting on the bed in her room during this conversation, and just asking her to consider that maybe she would not be a burden for them, but a gift, like I felt my mother had been to me and my sisters as she was dying.

Later, Carol sought information on the death with dignity law, with the intent to take a lethal dose of medication when the time came, and feel both that she had some control over the how, and when, and spare her children. At each juncture of decline over the next few weeks, Carol would tell me things like “I don’t ever plan to use that oxygen” or “I’ll be dead before I need a hospital bed”. One day dawned with the realization that a bed was needed, a commode, and soon the inability to get out of bed. Over these days of progressive weakness was a despair to “just get it over with” and hurry up to get the drugs needed to be able to die on her terms. I guess it is a “safety” feature, that a person who wants to acquire the drugs to use with the death with dignity legislation must first have two doctors who will attest to the terminal state of the person (this takes some time to arrange) and over two weeks ensue after the paperwork is filed before the person can actually get the drugs. And the person must be able to take the 90 pills, or liquid, on their own. A number of hurdles for a person who is dying soon.

Carol’s disease process sped up after she decided to pursue obtaining the drugs. I watched  the race of time, her great desire to be in control of the moment and not become totally dependent and her treacherous body, slipping quickly into that phase of living that we term actively dying. Too late…. even if the pills were available- she would not be able to swallow them. Too late….the family spending nights and days, feeling the awesome burden of alternating pain medication with repositioning and cleaning the frail body of their mother. Too late….to have the dignified part of the dying in Carol’s control.

The last visit I made, after we had turned over the unconscious Carol and I could see the tell-tale signs of imminent death, I was overwhelmed with the sense that I had failed her, we all had failed her, in not meeting her wish, to have death occur on her terms. But another voice whispered to me, life is never fully on our terms, and never, ever in our control. Just know that we take away something beautiful when we bathe and care for our dying loved ones. Yes, even dignified, or worthy of respect. Even sacred.

About Amy Getter

MS, RN, CHPN
This entry was posted in end of life care, hospice story and tagged , , , , , . Bookmark the permalink.

One Response to Dying with dignity?

  1. Lisa Miller says:

    Dear Amy. I wanted to tell you what a great blog you have here (just found it thru Twitter tonight), and I am eager to read about your experiences. Since I’ve had a job in hospice care like you, the whole gamut of issues, controversies, etc. (and how can I forget the wonderful satisfaction you get doing this work and helping your patients have as peaceful and comfortable a death as possible–such a privilege!!) Thanks so much for letting me live vicariously thru your experiences. Bless you for the very tough job you do, not just for your patients, but their friends and families, your co-workers, etc. Sincerely, Lisa L. Miller, R.N. (Madison area, WI)

    Like

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