This post was contributed by
Lisa Berry Blackstock, Soul Sherpa®
a mentor for those who are building an advocacy practice.
When a patient advocate decides to offer patient accompaniment services, the most common motivating factor is a desire to help a patient navigate the healthcare system more effectively. Better results can take the form of streamlined communication with healthcare providers, ensuring proper diagnoses and plans of care, and minimizing unnecessary diagnostic procedures and medical interventions when lifestyle changes might be all that’s needed.
There are cases, though, when patient accompaniment cannot realize better results. Specifically, in the case of patients diagnosed with terminal illnesses, it’s helpful to ask yourself a serious question: Can I be a professional source of resources and emotional strength if my client is dying?
When my father was diagnosed with metastatic non-small cell lung cancer in 2001 at age 61, and given a five percent chance of surviving a single year, I fell into an emotional tailspin of anticipatory grief so powerful I wasn’t able to emotionally support myself, let alone my father, during his final months of life.
I’ve always regretted my inability to be stronger for him. I hoped there might be some way I could spin my next professional life chapter by learning to be strong for others who needed patient accompaniment when confronting a final life sentence of some terminal illness.
It took a few years after my father died for me to wade into the waters of hospice and palliative care, first as a volunteer, then as a certified specialist. I surprised myself at the strength I learned to muster on behalf of others when faced with the finality of looming death. Rather than being preoccupied with death waiting, I flipped the scenario and grabbed onto life that was still breathing. I refused to let the inevitable taint my perspective. If someone I knew personally or professionally was still alive, even with a terminal diagnosis, I chose to focus on the quality of life that person was living, facilitating the options of how that person might address unfinished business, and the insistence healthcare providers present options providing a patient how much active care versus palliative gentleness that person wanted during the remainder of his/her life.
When patient advocates decide to offer patient accompaniment as a service, it can be helpful to ask yourself under what circumstances you feel comfortable serving as an accompanier. It’s wonderful to be an agent that aids in a physician eliminating unnecessary medications, that encourages exercise programs that promote balance and core body strength, and gets people to address their advanced healthcare planning. But when the scenario shifts to serving as the accompanier to a client where the final outcome will be that client’s demise, do you desire to focus on a client with a beating heart and a likely list of loose ends to address?
The role of a patient advocate entrusted with the work of providing professional, ethical, and emotional assistance to a client facing a terminal diagnosis is not a good match for every advocate. This isn’t an issue of good or bad, or right or wrong. The issue is every advocate who decides to offer patient accompaniment must acknowledge his/her own strengths and specific accompaniment interests.
There is an important place for traditional patient accompaniment where a client’s mortality is not an issue. There are those clients, however, who find their bodies in a terminal condition and in need of an advocate for those needs.
The type of patient accompaniment services you might choose to offer will likely benefit by asking yourself in what scenarios you can make a difference. Whether the answer be traditional accompaniment, wrapping-up-a-life accompaniment, or both, it is essential to know your strengths prior to engaging this type of client. This introspective exercise will increase the likelihood that you will be a patient accompanier who makes a beneficial difference, regardless of your client’s’ needs.