RIP Ramona – With Appreciation for The Lessons She Taught Us

Ramona – whose real name was Rosemary – has died. She did it (mostly) her way.

I first shared Ramona/Rosemary’s story with you a few months ago. She had contacted me through my patient empowerment work asking me to help her die. After a heinous surgical medical error many years ago, she could no longer be treated to provide (by her own definition) any quality to her life. So she wanted to put an end to her misery. Her primary care doctor, fearful he would be arrested, refused to help her.

After thinking about it long and hard, I decided that determining our own time and place to die can/might be considered the ultimate in patient empowerment. So I helped Rosemary learn more about options, legalities, how to make decisions, support (especially in the form of a private advocate) and more.

Included in my efforts were posting Rosemary’s request to two of the listserves I am part of, including the APHA discussion forum. I hoped members might come forward to provide additional resources. There were many great ideas posted – all of which were forwarded to Rosemary. And, immediately, one of our members wrote to me describing a woman she was working with who turned out (you guessed it) to be Rosemary. I was so very relieved to know that Rosemary had an advocate helping her!

Over the next few months, I touched base with Rosemary about once a week. She never committed to what her plans were, but she stopped replying in mid-March. So I wrote to the advocate* I knew had contact with her, and sure enough, Rosemary was in hospice, days away from death, with her advocate by her side. Her advocate then notified me just a few days later that Rosemary had passed – intentionally, yes – and peacefully.

Later I learned a few things from her advocate:

That ultimately, Rosemary’s doctor who at first had refused to prescribe hospice did relent, and did prescribe hospice for Rosemary. I also learned that the process of dying took Rosemary several weeks once she was under hospice care, throughout which our advocate stayed by her side, and hospice continued to keep her comfortable. One thing Rosemary had feared, and the major reason she wanted to pursue other avenues was that she did not want a prolonged death. I do hope she felt it was managed well even if it took longer than she hoped. (There are many quicker ways to die, including, in some states and countries, medical assistance. But they are not always readily available. Rosemary’s first choice was one of those alternatives.)

Before she died, during our email exchanges, I thanked Rosemary many times for the lessons she was providing. Here are some of those lessons:

• That the biggest decision-making struggle is QUALITY of life – vs – QUANTITY of life. That is much of what I focused my first ‘Ramona” post on. For some of us it’s an easy decision. For others of us, including many of whom have strong religious beliefs, that decision is either far more difficult, or is no consideration at all.
• No matter our own personal feelings on the subject, those advocates who work in med-nav advocacy are bound to find over time that they will be asked for support, resources or downright HELP from potential clients who want to die. In fact, I believe the majority of med-nav advocates will be faced with this request at some point. If this is your advocacy niche, you will need to think through your own beliefs and your own responses for when the question is asked. At one extreme, you may choose to help someone die. At the other extreme, you may simply refer the requestor to another advocate who can provide decision-making support, options and resources.
• The Right to Die is not about advance directives or preparing paperwork. Those are only tasks that must be checked off a list when one decides to die on his/her own terms. Based on the responses I’ve received on previous posts on this subject, many individuals and advocates think advance directives are an answer to this question. They aren’t an answer at all. Preparing a living will has nothing to do with making the decision to die on one’s own terms, and then making that death happen. This came through loud and clear in the midst of knowing Rosemary.

• But the biggest takeaway for me, piggy backing on discussions my father and I had many times, is that death is simply the next stage – the final stage – of life. Just as we prepare for other aspects of our lives, and then do everything we can to steer those ships, so too can we prepare and steer toward our own deaths, as well.

Rosemary’s legacy is that she provided the opportunity for us to think about a subject that many would prefer not to, but in ways that help us with decisions in our own lives, too.

So, for those lessons, I honor Rosemary for helping us all, and pray that she rests in peace, knowing that her life mattered and that her experience with death will have a positive ripple effect on many others, too.

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*I have not mentioned the advocate by name because I’m not sure she wants her name public. I invite her, if she so wishes, to comment below with as much information as she would like to share.

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Here is a link to the original Ramona / Rosemary post.

Here is more reading to help you learn more about the Right to Die, ranging from legal, to religious, to resources and more.

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