Absolving Family Guilt with Kindness
By Betsy Evatt, LCSW, CMC

The three of us sat huddled together in the San Diego nephrologist's office. We awaited our instructions on how to proceed with the necessary graft to get the dialysis started. My client, a diminishing 89 year old had once played golf daily and travelled the world. Her daughter, a St. Louis attorney was here specifically for this appointment. I had been Vi's geriatric care manager for two years.

In addition to Vi's renal failure, her diagnoses included insulin dependent diabetes; severe osteoarthritis, many cardiac problems; and failing vision. She took 15 pills throughout a day in addition to her injection and finger sticks. She dutifully recorded her blood pressure and her glucose readings on a spread sheet three times a day. The spread sheet was the brainchild of her son, who also visited from Washington State monthly. She maintained her low salt, low sugar diet and fluid restrictions. I never heard Vi complain. Her biggest annoyance: she got very little sleep at night due to running to the bathroom regularly. Her brain was working quite well.

To help Vi to eat correctly, the children had found a wonderful woman who cooked no salt, no sugar gourmet meals and delivered them to the home once a week. Once following a doctor's visit Vi "needed" to stop at the taco shop on the way home for a carne asada burrito. How could I deny her? It was the only time I saw her do it. She savored every salt-filled bite with her eyes closed.

So, when the doctor walked in the room and efficiently began to outline the next steps needed before dialysis, we all grew quiet when Vi sheepishly looked into the doctor's eyes and asked, "Doctor, would you be very disappointed in me if I didn't want to go through with the dialysis?" The doctor took a seat, took Vi's hand, looked kindly into her eyes and said, "Of course not Vi, that is totally your decision." The doctor then began a calm, gentle discussion of what it was like to die from renal failure because that was what we were talking about. Bottom line, renal failure is a very peaceful way to go.

We walked out of that appointment and the three of us continued the discussion that we hadn't anticipated having. One major task to be assigned: who was going to tell the brother, who dedicated much of his extra brain power to creating systems for his mother to follow that would help her live forever. Daughter took the responsibility of presenting Vi's wishes to her brother. I would be there for back-up because I was the one who would see him after daughter returned to St. Louis and he came for his shift in San Diego.

Most care managers have participated in a scene like this. Our client has decided that enough is enough and she doesn't need to exhaust every medical treatment towards immortality. Our clients tend to GET IT, but their kids have a harder time. The son knows about the technology available and wants everything done for his mother because of his knowledge and because he loves her. If he doesn't encourage her to keep going, is he telling her "it's ok with me for you to die?" Is he allowing her to "give up, take the easy way out?"

The care manager must understand our role as advocate for our client and be able to help the family come to terms with allowing the elder to dictate her demise. Our Pledge of Ethics defines our role: "My first duty is loyalty to you. I will always provide services based on your best interest, even if this conflicts with my interests or the interests of others." Our duty to the family is to have the expertise to assist them to support the elder's decision.

Dennis McCullough's beautifully written book gives the care manager some ammunition. Dr. McCullough sets forth the doctrine of "kindness" in an easily understandable fashion:

"Although some families and caregivers may actually rise to extended enactments of love (or simply loyalty, decency, respect, and gratitude), kindness is the single most reliable ethical and practical guide to doing this work well. Because of the ultimate powerlessness and dependency, indeed, the utter frailty of the old and infirm, kindness is the fundamental position that a caregiver has to sustain."

When in doubt, don't argue, don't cajole, don't dictate - listen kindly to what your elder wants and doesn't want. It's about as black and white as anything we as care managers do. Slow medicine is about spending more time listening and helping others to hear and act kindly. Advocacy and loyalty is about extending this kind ear and acting accordingly to promote the desires of our client.

Dr. McCullough poetically guides us in our task of helping children accept that quality is more important than quantity of life for the old old. These sick and tired people have watched their bodies fall apart and their spouses and other dear friends leave them. They are ready to go and don't want to "disappoint" those they will lovingly leave behind. We need to assist the children to let go:

"Over the long and difficult months and years of sharing our parent's journey to the mountaintop, we have changed and matured in the depths of our understanding. The view from that passing height of human experience reorders priorities. Our deep identification with the frailty and the needs of a dying loved one awakens in us a new capacity for compassion. Our daily practice of caring has deepened our humanity. Bringing these changes forward to our own lives enriches our relationships and seeds the covenantal ground from which our own future well-being will grow. A good death for our parent means a better life for us."

Vi's son listened to his sister. He listened to me when we worked out the hospice arrangements for his mother. He put away the spread sheets and blood pressure logs. He visited with her while she was lucid and held her hand when she was not. He and I took a walk around his mother's block a couple months after Vi was gone. He knew he had honored his mother's wishes to let her go. He felt no guilt at not forcing her into the dialysis that he had wanted for her. He knew he maintained his covenant to the end.