A Better Road
We all die. My question is under what circumstances.
Like Tom Graboys, I want my last days to be joyous, surrounded by people who matter to me, people I love. Let there be laughter, storytelling, music and wine.
I will raise my glass to toast the the words of Mario de Andrade in “The Valuable Time of Maturity.” (Chapter 5)
“My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.”
I want my friend and collaborator Kirk Hall with me at the joyful end.
Kirk is a bear of a man. That, and his rumbling voice, command attention. He’s usually the smartest guy in the room, and people know it. I do.
Kirk was and is a marketer. His product now is a cause: better lives for fellow Parkies. He blogs and writes books about PD, his best known being “Window of Opportunity.”
We met electronically in 2015. Each of us was urging the Parkinson Disease Foundation to make palliative care that year’s topic of concern. PDF did. We each wrote proposals.
Kirk and I were together for the first time in Denver in October 2015 for an international meeting of health care professionals, PD patients and their care partners. The subject was reshaping palliative care specifically for Parkinson’s.
The council of Parkies and care partners urged far-reaching changes in PD care. Kirk and I were principal authors of the final report that was published in the online journal Nature in 2017. In it, we invoke the memory of Tom Graboys and his clinical greatness. Excerpts from our report follow:
“The council endorses palliative care as an approach to the care of Parkinson’s disease patients and their families that seeks to reduce suffering through spiritual, psychosocial, and medical support. This approach should start at the time of diagnosis, as this is a very challenging time for patients and care partners; includes better emotional support, educational resources, and closer follow-up than is currently standard; and continue through end-of-life care and bereavement…
“The Graboys’ allegory contains many of the early stage recommendations of our own prescription for PD Palliative Care and is based on the approach Graboys took with his own patients. While such an approach may not fit every physician or patient we hope, it provides some useful examples of patient-centered care for PD.
“We envision a new, improved approach to Palliative Care based on a ‘three-legged stool’ including the patient’s primary care physician and neurologist (leg 1), a PD palliative care team (leg 2), and a PD support entity (leg 3). The ‘three legs’ are meant to provide support for patients, care partners, and families throughout the PD journey.
“Early stage: diagnosis to 5 years (honeymoon period)
“Given confusion and misperceptions about palliative care, we suggest using the term ‘supportive care’ and discussing this concept as PD Life Enhancement, or something similar. Palliative care should provide a comprehensive, coordinated, and consistent approach for the medical and PD support communities designed to maximize quality of life for patients, care partners, and families starting at diagnosis and to reduce stress for the duration of the disease and bereavement period.
“The key points for diagnosis were included in the Graboys allegory. Another important element is sharing informational resources. We recommend scheduling follow-up a month after diagnosis since many patients are ‘shell-shocked’ and unable to absorb much beyond the words PD. This is an opportunity for the doctor to assess how the patient and care partner are doing, ask if they have reviewed information resources, and answer questions.
“We recommend an appointment a year after diagnosis to assess the patient’s and care partner’s ‘readiness’ to be provided with additional informational resource. Most people should be ready at that point and some may have already begun this process on their own. If not, we recommend discussing why they are not ready.
“Some patients take the ‘what I don’t know won’t hurt me’ approach. It is important to share that in general, patients and care partners who do best in managing PD take ‘ownership’ of it so that they can properly advocate for themselves and make good choices.
“We recommend participation in self-efficacy or chronic disease management education programs. This is also a good time to revisit the potential benefits of joining a support group. The doctor should have a working relationship with regional and local support groups.
“Middle stage: 5 years to advent of symptoms that substantially affect daily living
“The middle stage is a crucial time for patients, care partners, and families. It is a time when learning can take place relative to late stage. Plans and decisions can be made to make the later stage easier. Wrestling with these issues, including faith, can create acceptance and peace of mind, making the last stage of the journey far less stressful. Tasks should include:
A personal plan for taking ownership of possible outcomes, including the possibility of financial challenges.
Develop end of life wish list and legal documents including advance directives.
Discuss with doctor what his/her role will be in end stage.
Discuss care partner plan for assistance and self-care.
Begin assessing need for in-home safety and for equipment.
Consider counseling to address faith/spiritual issues or concerns.
“Many patients, care partners, and families miss this extremely important opportunity for a variety of reasons. They may not have as much warning as they think before they are in the thick of late stage and end up scurrying around to find resources, fighting among themselves at a time when they need to be focused on caring for each other. They may not want to face the inevitable decline of their loved one and the difficult decisions this entails, so they take the ‘ostrich’ approach by sticking their heads in the sand. PD palliative care clinics may have value in helping families in this stage.
“Late stage: advent of significant disability/hospice to death/bereavement
“In our model, the late stage becomes a matter of implementing plans and preferences identified in the middle stage including hospice when appropriate. Legal paperwork will be available to minimize confusion, misunderstandings, or other ‘bumps in the road.’ Of course, it is not likely that all developments can be foreseen and planned for, but these should be the exception. If the plan includes contingencies based on the nature of specific health issues as they unfold, there can be ‘course adjustments’ as opposed to confusion and stress related to confrontation of unanticipated issues.
“From our perspective it seems that many neurologists are uncomfortable remaining involved after they can no longer ‘fix’ their patient. Training in palliative care or involvement of palliative medicine specialists could help remedy this issue.
“It is extremely important to be mindful of care partner stress/burnout at this stage, and this is an area where a palliative care team could and should add great value. The team needs to be aware that the care partner can become so overwhelmed that they do not take the time or have the energy to reach out for help.
“Medical community proposal
“We proposed a fundamental shift in the mindset and training of doctors starting in medical school to facilitate the changes discussed, including getting to know patients and care partners beyond their medical records and the importance of remaining engaged in late stage to help ensure a ‘successful transition to death.’ We would describe this as one in which the care partner, family, and medical team can feel at peace because they did everything possible to honor the patient’s wishes about how he/she wanted to die.
“Another recommended area of focus for medical schools is the ethical aspects of working with patients who would be better served elsewhere. This is a sensitive subject because it shines a spotlight on doctors who choose to continue treating a patient despite knowing better options exist. We have seen many patients in our support groups receive inappropriate treatments or be incorrectly told there is nothing more to offer by doctors without PD-specific knowledge or skills.
This, I believe, is a Better Road for the Parkinson’s journey. I hope you do, too.