Putting the Care into Your Care Plan
As part of the Be a Hero, Make a Plan campaign, we are capturing volunteer perspectives that get to the essence of why care planning is important. To learn more about care planning and to download our resources, visit our Care Planning webpage.
I have been part of the Advance Care Planning trend here in West Michigan since it got started back in 2012 both on the hospital and the community side. I also sit on a biomedical ethics committee for the same healthcare system which has given me a unique vantage point from which to observe our progress over the years since much of what we deal with are complex cases involving patients who lack competence, clarity or consciousness and who seem to come with an abundance of family and strong conflicting opinions or no one at all. Situations like these create havoc with medical staff sifting desperately through the layers of complexity in an effort to deliver quality care. When there’s an advance directive, we give a collective sigh of relief. When there isn’t, we collectively shake our heads.
If there can be silver lining to this pandemic, it’s that it has forced us to consider the implications of facing a life-threatening illness in complete isolation. If you’re like me, your imagination has wrangled with the realistic potential of having to choose between being on a ventilator, alone, in a makeshift ICU or certain death. Would we… could we do it? What if we became too sick too soon to make our voices heard? Who would make that decision and what would the answer be? From what I witnessed this past year as part of my volunteer service, it seemed so much of the anguish suffered by the patients and families could have been eased by good care planning. So what are you waiting for? Make a commitment today to be a hero, to yourself, to your loved ones and to your healthcare community.
Let me offer some observations I’ve made that might help ease you into the process and help you along the way.
First. Your care plan is not a stone tablet.
It is a signal, a sign to your healthcare providers that you have put great thought and consideration into things most precious to you and that you have made certain choices and decisions when it comes to your life and your death. The healthcare professionals I work with consider a patient’s care plan an invitation to connect on a deeper level. It offers them a unique patient perspective and a launch point for further discussion. You are not issuing an edict for doctors to follow without question. You are opening the door to quality care as you define it.
Second. Getting Started.
Make a date with yourself, grab a notebook and head for the woods, a park, your balcony or back patio and take a quick snapshot of your life. What drives you? What gets you out of bed each day? What constitutes YOUR best life? Is it children, family, music, writing, baseball, work, running, quilting, learning, reading, basketball, video games, religion? No list is too great or too short, as long as it’s yours.
Now take a moment at the other end of the spectrum and think about what might matter to you in a health crisis. Don’t dwell. This is a top-of-mind exercise. Just capture your gut responses… hospice at home, my dog in the hospital, casket, no casket, burial, cremation, gospel, traditional, medieval, this reading, that poem, a suit, my favorite sweater, a wake, this park, that church, my mosque, that hymn, aunt Celine, probably not cousin Randolph.
Rather not go it alone? There are great online resources to get you started, including NPAF’s new care planning guide, Can We Talk About Care Planning? that includes worksheets and helpful prompts for people to think about what matters most to them. I still love the “Let’s Talk Turkey” concept from The Conversation Project which takes advantage of a family feast to get the stories and thoughts flowing. The “Hello” game also promoted here by NPAF is another light and nonthreatening way to generate conversation with friends or family. Belong to a book club? Atul Gawande’s, “Being Mortal” and the beautiful work of Paul Kalanithi, “When Breath Becomes Air,” are powerful thought-provokers guaranteed to generate rich conversation.
COVID presented an unexpected opportunity for my partner and me. During lockdown last spring, we took the concept of social distancing to the extreme by walking our dogs in the village cemetery late in the evening. In the process, we naturally found ourselves reflecting on the end of life and what that might look like for each of us. Some of these discussions even led us to make some changes to our existing care plans.
No matter the method you choose, don’t forget to capture your thoughts. They will become the bones of your formal care plan.
Third. Who speaks for you?
Whatever you may call it: Backup Person, Patient Advocate, Patient Representative, Ombudsmen, Durable Power of Attorney for Healthcare, etc., this will be the most important choice you make when creating your plan. Take your time and think it through. Here are some important considerations:
- DO start with a list of 2 to 3 people if you can. This allows someone to decline the role and provides you with a backup to your backup.
- DON’T automatically designate a spouse, oldest child or closest sibling simply because you think that’s what you are supposed to do. Courtesy and obligation have no place here and can do more harm than good. Case in point: When my father began to decline, I suggested we review his care plan. He and my mother were of the generation that never openly spoke of these matters and their idea of care planning was to make out a “Living Will” in their attorney’s office, seal it in an envelope and secure it in a safety deposit box. With my mother gone, I thought it best to find out what he had in store for my two sisters and I and it was a good thing I did. Somehow an attorney had allowed my father to designate all three of us as his primary patient advocate and he had managed this without our knowledge or consent. When I asked him why, he simply said that he didn’t want any one of us to feel slighted. Luckily my father had managed to avert any health disaster that would have called that document into play which in my mind was a potentially bigger disaster averted. As it turned out, of the three of us, I was the only one comfortable taking on the role and my sisters were grateful for the opportunity to decline. My father and I created his final directive together and I was able to carry out his wishes in the end, which brings me to my next point…
- DO involve your backup person in both your care planning and your care journey. Who better to have by your side for significant appointments, events or treatments than the person you’ve chosen to step in and step up if necessary. The more you involve them along the way, the more you’ll become of one mind for future decision-making.
- DO feel free to get creative here. My cousin out in Seattle is single with no children. She also has colon cancer and has been through 3 rounds of chemo and 2 hip replacements in 5 years with multiple complications. She has developed a 3-prong approach to her advocacy. Her brother accompanies her to significant doctor’s appointments and reports the outcome to me (he’s a great listener but hates to take notes), so Julie can simply be the patient. Her best friend is her routine treatment support and I check in by phone, email and text regularly. The communication flows freely and regularly among the 4 of us, the care providers are never without a point person and Julie feels supported and represented by people who have a day-to-day grasp of her wishes and desires.
- DO revisit this decision often. Relationships change. People come in and out of our lives. Make it a New Year’s tradition to review the decisions you’ve made and give yourself permission to change them if necessary. Remember this is no place for passivity, courtesy, favors or obligations.
Share your work
Once completed, share your plan three ways:
- Give physical copies to your back-up person(s), your doctors, appropriate staff if you permanently reside in a nursing or assisted-living facility or are on a temporary stay at a rehab or long-term care facility. Distribute as many as you wish among your family members and loved ones. Plus always keep a copy posted on your refrigerator door if you’re receiving any sort of in-home care.
- Talk to your healthcare providers about transforming your physical document into a virtual resource that can be easily retrieved by the medical offices, clinics and hospitals you frequent.
- And finally – talk, talk, talk! Don’t be shy – you’ve gone through a lot of soul searching to create your care plan. Share what you’ve discovered and decided with those most likely to be impacted by it. While these may not be the easiest conversations to start, they could very well be the most important you have and ones not easily forgotten.
By combining a physical care plan with a robust conversation you are creating a winning combination guaranteed to make you the hero you set out to be.
Good luck and good planning.
Julie Wallace is a NPAF volunteer and a resident of Michigan.
If you would like to volunteer for NPAF, please sign up here.