Last month, there was a beautiful article on Medpage titled "Intensive Caring: Reminding Patients They Matter-How to care for those who no longer care about themselves" by Harvey Max Chochinov, MD, PhD.
Dr. Chochinov quotes Dame Cicely Saunders, the founder of the modern hospice movement, for her famous statement ""You matter because you are you, and you matter to the last moment of your life".
That statement became an integral part of medical and nursing education in the past and a powerful argument against the current push for legalizing medically assisted suicide.
As Dr. Cochinov states in his article:
"There is abundant evidence that patients approaching death are susceptible to feeling that they no longer matter. When patients feel life is no longer worth living, healthcare professionals must affirm their intrinsic worth to patients for all that they are, all that they were, and all that they will become in the collective memories of those they will eventually leave behind." (Emphasis added)
and
"A foundational element of this approach is nonabandonment, which demands committed, ongoing care and caring, even when patients no longer care about themselves. Absent someone who cares, suffering, like cancer, can grow, spread, and even kill." (Emphasis added)
and in contrast:
"Intensive caring sees healthcare professionals hold or contain hope when patients can no longer do so themselves. This means expanding one's therapeutic imagination to include the possibility that patients may find psychological, spiritual, and physical comfort, tolerable suffering, and for those near the end, a peaceful death. Toward the end of life, hope tends to conflate with meaning and purpose and may be nurtured through connections to those who, or things that, matter." (Emphasis added)
As a new nurse, I was nervous when I was assigned to terminally ill patients.I asked the senior nurses how to approach these patients and if I should be solemn or cheerful. The senior nurses said they didn't know.
So I came up with a plan. After I clocked out after my shift, I started just visiting with them and listening to whatever they had to say.
I found that there were two basic questions that needed to be answered: "What do you want?" and "What are you afraid of?"
These patients opened up about wanting to die at home without burdening their families and not being in terrible pain at the end. I was able to tell them about good home healthcare options, pain management and being open with their doctors and families. This opened the door to great conversations and often even a lot of laughter!
(I was later chastised by some nurses who criticized the laughter coming from these rooms. I responded by asking them who needed to laugh more than patients in these situations?)
I also started spending time with the relatives who had questions of their own. They were relieved to talk about their fears and sadness and wanted to know how to help their loved ones.
Once, on an on an oncology (cancer) floor, an elderly woman with terminal cancer told me that she wished she could have just one more overnight sleepover with her granddaughter before she died. I told the other nurses and they all enthusiastically joined in with snacks and sodas to make it happen during one night shift, remembering their own special times with their grandmothers.
It was a great success, even though I was caught by an administrator who said I should not make this a habit.
In another case, an elderly woman with advanced cancer was considering another chemo treat but confided that she feared becoming more of a "burden" on her daughter's family with whom she lived.
I told her that I had just spoken to her daughter the day before and the daughter told me how grateful she was for her mother's presence and help. For example, the daughter said that since she and her husband both worked, they were relieved to have the mother there for their school-age children when classes ended. The daughter told me how the children loved climbing into bed with grandma and telling her about their day.
My elderly patient was almost reduced to tears by this revelation but then she laughed and admitted that sometimes she fell asleep when the children were talking to her.
I told my patient that whatever else she needed to consider before agreeing to the chemo, fear about being a "burden" should be eliminated.
Sadly, Dr. Chochinov cites studies that have shown when patients feel abandoned and bereft of care, they are more likely to contemplate or die by suicide. In addition, he cites studies on the desire for death in the terminally ill "report lower family support relative to those who don't."
According to an October 4, 2023 Medical Net news article "Review of Oregon's assisted dying law finds significant data gaps":
"Since 2017, fear of being a burden has been cited by around half of those opting for assisted death". (Emphasis added)
It's important to remember that no one has to be a medical professional to ask a friend, neighbor, church member, etc. in difficult circumstances to ask "What can I do to help?".
Just visiting with the person, watching tv with them or bringing a favorite food can be a real day brightener and give family members a much needed boost.
Personally, I know how lonely it can be taking care of a loved one with a terminal illness or a disabling condition without the support of friends or family. Family caregivers also need support and encouragement.
But I also know the wonderful benefits of helping others, both personally and professionally, even just by being there.