Kirk Hall and I are Parkinson’s patients who are members of a patient/caregiver council participating in a PD Palliative Care clinical research study as stakeholders providing ideas, input, and feedback to researchers. The study is just getting ready to start recruiting patients and caregivers in Denver, Edmonton, and San Francisco who are approaching late stage and value the idea of assistance and support in making plans that will meet their needs and wants. Check for details at https://foxtrialfinder.michaeljfox.org/.
The proposal below was developed by patients who live with PD and would like to assist the medical community in developing programs that will improve the lives of patients and caregivers at all stages of the disease. This post originally appeared on Kirk’s blog shakypawsgrandpa.com.
Comments or feedback will be appreciated!
Patient Perspective Proposal for PD Palliative Care
Kirk Hall & Gil Thelen
August 3, 2015
A key question is how this new, improved approach to Palliative Care (PC) might be structured. We are recommending a “three-legged stool” approach:
- Patient’s primary neurologist/PC team
- Patient PCP
- PD support entity (in Denver Parkinson Association of the Rockies– PAR)
- The “three legs” provide support for patients, care partners, families
For the purposes of this discussion, the PC spectrum will be divided into three stages:
- Early: Diagnosis-5 years (typical honeymoon period)
- Middle: 5 years-Advent of symptoms that substantially affect daily living
- Late: Advent of symptoms that substantially affect daily living/hospice – death/bereavement
Recommendations for each stage:
- Rebrand PC as PD Life Enhancement or similar to address pervasive confusion about what palliative care is.
- Proposed definition: A comprehensive, coordinated approach by the medical and PD support communities designed to maximize the quality of life for PD patients and caregivers. Also minimizes stress for the patient, caregiver, and their families for the duration of the disease and bereavement period.
- Program starts at diagnosis.
- After diagnosis, doctor explains what the Life Enhancement program is and how it was designed to help them.
- Key points to communicate during appointment during which diagnosis occurs:
- PD is a challenging disease for patients, care partners, and families
- Patients who do well with the disease don’t let it own them—they own and control IT.
- Here is a simple brochure that explains the disease. It discusses telling your family and others about your diagnosis. It provides a guide to local support groups and educational resources regarding Parkinson’s, nutrition, and exercise.
- You don’t have to do this alone. We will help.
- Let’s schedule a follow up session at my office for a month from now to answer any questions and discuss next steps.
- Key points to communicate during second appointment:
- We have designed a cooperative Life Enhancement program with (PD support entity) that is available to provide education, assistance, and resources to make patients and care partner’s lives with PD better.
- Here is a SECOND brochure that describes the Life Enhancement program, including how to manage the weeks and months following your diagnosis.
- The first step is to attend one of the orientation sessions that are held on a regular basis at a convenient location. Transportation to the session you choose to attend is available, if needed.
- It is extremely desirable that both PWP and care partner attend a session like this where they can interact with other PWPs, care partners, and (PD support entity) staff to get them off on the right foot, hopefully precluding/reducing issues related to denial, apathy, depression, anxiety, etc. A backup to this, if there is resistance (unwilling or unable to attend), is a DIY self-education program with comprehensive list of resources, step by step list of recommendations, etc.
- I see that there is a session coming up on _________ in your area. Would you like me to make a reservation for you? I understand you may need time to process all this, so there is a number on the brochure you can call to make a reservation.
- We can’t do this for you, but we will do it with you. We are prepared to provide you with the tools you will need to take ownership of your future with PD.
- Orientation Program*
- Conducted by PD support entity (participation by “experienced, knowledgeable patients is desirable)
- Address needs of patients, caregivers, and families
- Media advertising (free public service) will be needed to reach patients (and their caregivers) who are diagnosed by doctors (non-MDS) who are unaware of this program
- Preferably live to allow interaction (some elements could be videotaped)
- Connect them with a support group tailored to their needs (young onset, newly diagnosed, and more)
- What Do I Do Now presentation (including what is the PC/Life Enhancement program and how will it help me/us):
- Desirability of working with a movement disorder specialist (MDS)
- List of MDSs in my area
- PD 101: Comprehensive PD information (what is it, symptoms, progression, etc.)
- Partners in Parkinson’s (https://www.partnersinparkinsons.org/parkinsons-advocate-program)
- Davis Phinney “Importance of Exercise” presentation
- Patient to Patient program: offer to connect them with an “experienced” PWP who has “been there/done that”. Could be called a “shepherd”. Shepherd is a volunteer who is willing to be available to talk on the phone, meet in person to provide suggestions/guidance.
- Participation in clinical research studies (why & how)
- Resource handout
- Recommended information websites
- Recommended webinars
- List of available medical devices for borrowing
- Tremble clefs, dance, yoga/exercise programs
- Continue with ideas up to approximately 5 years including learning about what they will need to do in the middle stage and why it is important.
- Develop a plan to make as many of these services as possible available to patients and caregivers in remote/rural areas (possibly record programs and post on you tube).
*This will require significant new sources of funding as well as a great deal of planning/coordination.
This stage can and should be a crucial stage because it is a time when learning can take place relative to late stage and plans/decisions made that will make this stage easier for patients, care partners, and families. Wrestling with these issues including faith has the potential to create acceptance and peace of mind for all involved, making the last stage of the journey far less stressful.
- Developing a personal plan for taking ownership including the possibility of financial challenges
- Develop end of life wishes list & legal documents
- Discuss with doctor what his/her role will be in end stage
- Discuss options like hospice, staying at home, preferred death choices, brain donation, and more with doctor
- Faith issues/choices
- Evaluate in home services options, assisted living/nursing homes, etc.
- Consider what would trigger move out of home choice
Ideally, late stage will become a matter of implementing plans/preferences identified in middle stage. If the plan includes contingencies based on 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. Bereavement would be easy to overlook, but if we are to commit ourselves to fulfilling the PD Life Enhancement “mission” as defined, we must be mindful of the needs of the caregiver and families following the death of the patient.
Medical Community Proposal
There is a need for a fundamental shift in the mindset and training of doctors (see references):
- Starting with med school, the ethical aspects of working with patients (and not referring them appropriately) who would be better served elsewhere must be addressed.
- Get to know patients and caregivers to a degree that enables them to be one of the “legs” of the “three-legged stool”.
- Their role does not end when they are no longer able to prolong the life of their patient. In this new model, they are likely to be the one patients and caregivers (and their families) will most depend on to ensure a “successful transition to death.”
- One where the caregiver and 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.
- This is not the current mindset of many doctors due to accepted practices and training starting in medical school. With that in mind, PC needs to become part of med school curriculum. Create and implement program for changing orientation of existing doctors.
- Develop telemedicine capability that would allow palliative care services to be made available to patients and caregivers in remote/rural areas.
Upon review, it seems that none of this is the norm in our current system, so everything here is an unmet need, in our opinion. Some of it ends up happening with some patients and caregivers (based on their personal research, recommendations from others, church counseling or other), but not based on an intentional, organized PC program. The goal here is to achieve the outcomes described for as many as possible, not just for the fortunate few.
That said, Rome wasn’t built in a day. Priorities will need to be established. Programs that attempt to achieve too much too fast typically fail. We would recommend choosing priorities that have the greatest potential to positively affect the overall PC experience for patients and caregivers. Here is a description of actions to pursue in the short term concurrently, if possible:
- Changes in medical school curriculums and related training.
- Create a PC team (similar to the UCH model) and focus on the middle stage educational piece/plan development.
- Track status of each patient/caregiver in late stage to ensure plan is being followed. Assist/support/intervene as necessary.
- Develop and implement standard practices for initial diagnosis appointment (including rebranding).
- Develop telemedicine capability to reach the PD population in remote and rural areas.