It's Better to Travel with a CompanionKelly Blackwell Dec 8, 2020
We are fellow sojourners on this earth, each of us on our own journey. Palliative care practitioners have the opportunity to serve as travel companions and step into the trenches with people who are dealing with tough issues related to living with a serious illness. I count it a privilege to walk along side patients and their loved ones as they navigate the health care system and explore what matters most to them.
A travel companion is willing to go with you to foreign lands, to go before you to find out where the best services are, and perhaps to serve as an interpreter. Also, to make sure that the baggage you are carrying is not too heavy, and that its contents are what you need and want the most. A travel companion is there for your journey and has your best interests at heart. There is no sight-seeing or change to the itinerary unless you approve.
A palliative care travel companion provides a safe space for a person to be truly known by being curious about them, and by offering what I like to think of as genuine, positive regard. That safe space is sacred and can be a breeding ground for finding true hope in the midst of arduous journeys. The positive regard means that I will believe the best about a person and be as unconditional and nonjudgmental, and aware of my own biases as much as I possibly can, so that what I offer is patient/family-centric, not based on my own agenda. It is my responsibility to ferret out any hidden beliefs I hold that would impair my ability to do this in a genuine way.
One of my longest journeys as a travel companion happened with a beloved mentor of mine, Janie, who battled Parkinson’s Disease for two decades before she finally succumbed to it. She resisted it unto death. Until that came, she soldiered on, took countless pills, participated in a double-blind study for deep brain stimulation, endured her tremors in private and in public, determined to live and walk in her purpose for as long as she could. She prayed for healing, she was the subject of others’ prayers, yet her disease raged on. She counted on a miracle of healing of her body on this side of heaven, and in the later stages of the disease, she resisted hospice care.
As a hospice nurse, I had taken care of Janie’s father who died with the same disease, about 10 years before she herself was diagnosed. Janie was his primary caregiver. We talked about his experience, but she believed hers would be different; or she really didn’t ever want to believe that she was on the same path as his; such was her faith. I tried pointing out to her that she had seen her father die of this disease, and I begged her to prepare for her own death, just in case, so it would be peaceful and play out based on her expressed preferences. I tried to say in a variety of well-intentioned ways, please give in and let go; please don’t be too hopeful, don’t be too sad, try this, don’t try that; don’t keep trying to walk and then fall; go ahead and wonder why this happened to you, but don’t wonder to the point of despair, and so on. My itinerary for her journey. She would have none of it, but she did want me at her side; such was her way and such was her choice. I learned so much from my experience with Janie about giving people what they want versus what I want for them. It was her life to live and die, not mine.
It’s so tempting to guide someone along and tell them how they could escape their discomfort. It may seem so obvious, like taking a pain medication for pain; but people will make choices based on what they believe. The better way of a companion is to learn about the person they are accompanying first, offer education that allows for an informed decision, then support them every step of the way as circumstances evolve. In the end, no matter how many twists and turns there are and no matter that you might have made a similar journey following a different map, you will have provided a most sacred service – that a fellow sojourner did not find themselves alone.