For years I put off completing an advance directive. Even after 30 years in the social work field, I would discuss the importance of this with individuals and their family members. I worked with diverse populations, so these were important documents to have in place. For them.
It wasn’t until the last few years of my career, when I worked in a SNF/IRF that I truly realized the importance of the individual, while able, to make their end-of-life wishes known. I was now in my 60’s, and seeing individuals not only older than me, but also younger than me, come to the facility. Some previously sick, but a fair number had been healthy before entering the facility. Few had completed advance care planning documents, but most didn’t. Most had never even had an advance care planning conversation with a clinician, let along with their family members. On a weekly basis, I witnessed the emotional pain and confusion family members faced when making care decisions for their loved ones. A few of these situations stand out.
The Healthy 78-Year-Old
One resident was a 78-year-old female, who had been active and in good health. She had been placed in our facility after being diagnosed with an inoperable brain tumor. There had never been an advance care planning discussion. The family wanted every attempt made to treat her, and the resident obliged. She made her daughter her healthcare proxy. During the first month her status deteriorated, and she exhibited inappropriate behavior towards staff and other residents. She then became fearful, refusing to eat or sleep. The daughter was understandably upset and embarrassed by the change in her mother’s status, but still wanted to continue with full treatment. I had to wonder, is this what the resident would have wanted?
It wasn’t until the resident started getting physically abusive towards others, including the daughter, that she saw what her mother’s life had become. After many hours of pondering the new reality, the daughter made the decision to change her DNR and NC MOST form to reflect a change in medical care. The resident was placed in hospice care and died about one month later. The daughter later shared with me that because of what she saw her mother go through, she was going to have a conversation with her family and complete her advance directive.
The Not so Steady on His Feet 67-Year-Old
Another case involved a 67-year-old male who had been in rehab twice due to falls and fractures in the home. He successfully completed rehab each time and returned home with his son. During his last stay, he was unable to participate in rehab due to overall weakness and failure to show improvement. He was also on dialysis, and was transported to a local dialysis clinic three days a week. He started to refuse dialysis, and canceled the appointments on his own. The clinic was threatening to give his chair to another patient if he continued to cancel. He was losing weight, and reported inability to eat and was living on supplements. His Medicare funding for rehab was ending and I made numerous attempts to have both his son and daughter participate in a meeting, but the daughter never responded. The resident documented his wishes – he wanted to discontinue dialysis and return home with palliative care, and the son supported his decision.
Finally, the daughter appeared at the facility, and demanded her father continue with rehab and dialysis. She did not agree with his wishes, and convinced him to return to the hospital and have a feeding tube inserted. The resident had confided in me; he did not want to undergo any more treatment, but agreed to go ahead with the procedure just to please his daughter. It was the first interest she had taken in him in years, and he did not want to disappoint her. This caused friction between the daughter and son. The resident returned to the hospital and a feeding tube was inserted. He developed an infection and was transferred back and forth to the hospital on multiple occasions, and died a few weeks later, in the hospital.
Reflecting on National Healthcare Decisions Day
Experiencing the pain so many residents and families endured, along with the conflict between family members, made it clear to me that I did not want to leave my children with this kind of decision. In my advance care planning documents, I made it very clear what medical treatment I want. I had the conversation with both of my children. I talk about it often. I think everyone should stop and think about the problems that could arise if they neglect to have this discussion. This topic is easier to discuss when there is no crisis. Could these wishes change? Absolutely. But, without having an honest and candid conversation, it is impossible to guess what kind of care your loved one may want.
National Healthcare Decisions Day (NHDD) exists to inspire, educate, and empower the public and providers about the importance of advance care planning.
Pat I. is a retired social worker, living in Asheville, NC. She willingly and often discusses her end-of-life wishes with her family, as well as with anyone who will listen.