What happens when your "client" is your own family

November 21, 2019

It is always easier to advise others than to take our own advice. This is especially true when it comes to our own families. I frequently tell my clients, “Your loved one is much more likely to listen to me than to you, even if I use the exact same words you did.” When I am talking with a client’s mother, for example, I do not have a history of their family’s relationships. This applies a filter to any conversation and may push buttons.  Parents still want to be in charge and not have their children tell them what to do.

I recently found myself in this situation when I was an advocate for my 89-year-old mother during two extended hospital stays. It was an unusual situation because she hadn’t spent any time in the hospital, despite her age and mobility restrictions. My mother was a biochemist whose area of research included red blood cells and platelets, which were issues that kept her in the hospital. The hospital staff was impressed by her intellect.

What are some of the biggest things for me that came out of this experience?

  • A physical distance of about 900 miles from home to the hospital was an advantage for me. For the first few days of my mother’s first hospitalization (which lasted three weeks), I was on site. This allowed me to get to know the hospital staff and the physicians. I also learned how to handle my mother’s condition, which gave her confidence in my ability to help her when she wasn’t feeling well. This was an important factor for a strong-willed, brilliant woman who was used to being in control. I served as her Health Care Power of Attorney (HCPOA), which made my role feel natural. My mother’s friends’ daily visits, as well as my brother’s two visits, made being 900 miles away from home easier for both of us.
  • Daily contact with medical staff. Once I returned home, the hospitalist called me everyday to update me with information about my mother’s condition. I asked questions and shared information with the doctor that I thought would be helpful regarding my mother’s mindset, history, and discharge options. The hospitalists were open about their coordination efforts and compromise options with other specialists who opposed certain directions for my mother’s treatment. As my mother’s advocate, I suggested an evaluation by an occupational therapist before discharge. I also insisted on a consult by an outside hematologist when the hospital staff couldn’t figure out what was going on.
  • Managing an effective advocate-daughter relationship with my mother. My mother asked me to “advocate” for her discharge at a point in time that would not have been clinically advisable; she felt it was a quality of life choice. The 900-mile distance allowed me to have a rational conversation with her rather than an emotional mother-daughter conversation. I explained to her that while she was previously accustomed to living at that level, it was actually dangerous for her to do so. When I explained more about what I learned, such as a risk of a heart attack, she no longer pushed for discharge. I also reverted to my usual tactic: when I needed to convince her, I had my husband do it! Just as I say to my clients, an outsider without family history usually fares better.

One of my biggest joys was when my mother said that while she didn’t want to be in the hospital, she was happy she got to see me in my professional role. She told me that she was impressed and proud of me. Even at age 60, when your mother says she is proud of you, it means a lot!

In the end, there were too many complications and our family had to make the difficult decision to discontinue treatment and choose comfort care. My mother was still actively participating in decision making and made it clear that she did not want any intubation. She did not want to live a life that would restrict her ability to be actively engaged in doing what she loved to do. I found myself thinking about all the discussions I have been fortunate to participate in regarding end-of-life decisions, including Five Wishes¹ and Death Over Dinner² both of which are excellent resources. I was prepared, but it was still hard. At that point, I couldn’t be the health advocate anymore, I could only be my mother’s daughter, my brother’s sister, and my kids’ mother. I was grateful that we were prepared, and the staff at the hospital was supportive. It made a huge difference.

How has this changed me as a Patient Advocate or Health Advocate? Every time I experience working on behalf of a client or with my family, it enriches my knowledge and my empathy. I’ve grown from this situation professionally and personally, and I can now say, “I have been where you are.” I have shared a few things with the Director of Patient Experience at the hospital because if I were in her shoes, I would want to know, although nothing would have affected my mother’s outcome. My family and I are grateful for the nursing staff and hospitalists there, especially when they let us sneak in my mom’s dog to say goodbye. Shhhh!

¹ Focusing on What Matters Most. (n.d.). Five Wishes.
² Death Over Dinner. (n.d.)

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