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.
*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.
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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5 thoughts on “RIP Ramona – With Appreciation for The Lessons She Taught Us”
Thank you for your words on this subject. The choice of how and when to die is, indeed, one of the most personal, powerful, and controversial decisions we can make as humans. In a way, it is the ultimate expression of our “patient rights.” Regardless of where each of us falls, personally, on the spectrum of choices here, as advocates we need to recognize that opinions in our culture are divided and diverse on this issue (e.g. physician-assisted suicide is legal and accepted in some states, but can land someone in jail in another). Instead of ever passing judgment, advocates need to do what we do best: gather and give information. We can also work to assure that any tractable barriers to a life choice are removed: Is your client where she wants to be and receiving the quality and kind of care she wants? Does she have access to a qualified and experienced palliative care team? Has she expressed and documented any and all desires around the death and dying process? This kind of advocacy work can sweep away the clutter and help a client see her choices clearly.
At the same time, given the varying current legal standards, advocates must educate themselves to work within the laws and systems of their state, and they must identify and maintain their professional role, even in the most heartbreaking circumstances. Thank you again for raising such important issues for us all.
Kent De Spain
Antioch University Midwest
There are few topics that tower in importance over this discussion. Thank you, Trisha, for writing about Ramona/Rosemary with such tender eloquence. In the event that we learn more about Rosemary (from her friends, family, or advocate), it may become apparent that her legacy far exceeds piercing the veil surrounding how we die and the timing of our death. Who knows with what acts of greatness she lived her life?
I have had the Ultimate privilege to know, advocate for and learn from Rosemary. When I first met Rosemary in June 2013, she had been living on Boost VHC for 12 months and desperately wanted to eat again. Despite having been warned that they “could make her worse with another surgery”, she was willing to try. Unfortunately, the surgery left her with only 5 feet of small bowel, not enough to absorb the nutrients she needed to live. While she did once again enjoy the sensation of eating throughout the fall and early winter, Jan/Feb were fraught with repeated trips to the ER for small bowel obstructions and NG tubes. She endured the placement of a PEG tube to vent herself but tethered to TPN 20 hours a day, she was trapped in her house. With spring approaching, she made the brave decision to exit this world. Always cheerful with a great sense of humor and a beautiful smile, she took her circumstances into her own hands and made the ultimate choice. I promised her I would not let her die alone. Invited for lunch on April 10th by the Innkeeper where I was staying, I asked the hospice home director if I should decline when they said the end is near. “If she wants you here, she will wait for you.” I was back from lunch a mere 20 minutes when she drew her last breath as I held her hand. I will never forget Rosemary. She taught me so much.
Sent from my iPad
Rosemary taught me not to fear death. It is after all a natural part of the life cycle. The comfort and care I witnessed at the hospice home was phenomenal. It brings a new dimension to my advocacy. Be not afraid. I am no longer the person I was before. Thank you, so much, Rosemary for the lessons you taught me. I hope you are dancing on cruise ships untethered.
I read your post with great interest because I have been involved with many Ramonas in my work. In my company, Ending Well Patient Advocacy, I focus on helping people have a good legal death, whatever that looks like to them. Most times, it’s having a conversation their family or physician does not want to have and educating them about their rights. As the Surrogate Consultant for the Final Exit Network, I provide education on various end-of-life issues, such as the importance of having advance directives and choosing an effective surrogate to get those wishes honored. Every competent adult has the legal right to reject any or all medical treatment as long as they have the capacity to do so except in the narrowest of circumstances. It does not matter if that treatment will save their life. People who want to die can always forgo antibiotics, a feeding tube, or CPR, whether 25 or 105. Yet often, these are given to a patient without consent, even at end-of-life, claiming it is the Standard of Care. People are now suing and winning when a medical team ignores an advance directive or a legal surrogate. In these “Wrongful Life” cases and other situations, courts have ruled it is not up to a medical provider to determine the patient’s will, and they are starting to pay a heavy price both civially and criminally. I hope Ramona found peace in her final days and is joyfully floating on a cloud on the other side.
Althea Halchuck, EJD, CT, BCPA