Being a True Patient Advocate

Before Mrs. H was admitted to our general medicine floor, there were many discussions about whether she could be safely cared for outside of an intensive care unit. Her labs looked bad (troponin 2.62 and rising, Sodium 121, TSH 11.40), so nursing and admitting protocols suggested that she needed to be in a monitored setting with a higher nurse-to-patient ratio.

We went to see her in the ED and felt an instant connection. Her smile despite feeling so poorly, her sincere and gentle nature, and her desire to get better assured us that we could serve her well on our medical service. Over the course of the next six days, we learned about her past, the circumstances of her current life, and her dreams for the future. As we came to know her, she wanted to hear more about our team – primarily professionally but also personally.

She had intentionally not seen any healthcare professionals in over 35 years – and so there really was a lot to take in and consider. Mistrust of contemporary medicine stemmed from a medical misadventure that her husband experienced involving cardiac surgery and feelings that his preferences were not acknowledged. They both decided to avoid the health care system from that point forward. We guaranteed her that we would listen carefully, respect her wishes, and do all that we could to satisfy her wants and expectations. In learning her story, her “goals for care” became clear and understandable.

In short, Mrs. H had been in her normal state of health until two weeks prior to admission when she started becoming short of breath with activity. This gradually worsened to the point where she was having dyspnea at rest. She had also noticed palpitations that initially came and went but then became constant. She denied any chest pain or pressure. Over the past two weeks, she had noticed swelling in her legs and that she was waking up gasping for air. She had to sleep in her EZ-chair the last two nights prior to admission because she was unable to lie flat. Mrs. H explained that she had never experienced anything like this before and she was not taking any medications prior to admission. The morning of admission, she was working hard to breathe and couldn’t even get out of bed, so she told her husband to call 911.

Her dietary staples were canned soup and Hamburger Helper; she admitted to eating about half of her meals at restaurants near home. She has been married to her husband, Mr. H, for 44 years, and in recent years she has been his primary caregiver because he had become blind. They lived in a senior living complex not far from our hospital, and she had been very active every day – caring for Mr. H and running errands. She had never learned to drive, and she would walk everywhere she needed to go. She particularly enjoyed watching the birds. She spent her afternoons reading magazines to her husband, and they both cherished that time together.

Her initial work-up revealed profound hypothyroidism, and an echo that showed a myxomatous mitral valve with a torn cord and flail anterior and posterior mitral valve leaflets – leading to severe acute mitral regurgitation. Her heart was not yet particularly large indicating that the heart failure was recent in onset. Cardiology was consulted for discussions about a potential valve repair and the different options.

Multiple members of our team and the cardiologists attempted to explain why a valve repair was in her best interest. We explained that repairing her valve, with novel less-invasive approaches, would likely return her strength and level of function to baseline. Nonetheless, she made it clear that she was not interested in having this done. Repeatedly refusing, she would always refer back to her impassioned decision to avoid any and all invasive procedures. In discussion with our team, Mrs. H reiterated that she appreciated not feeling pressured and felt comforted by our explicit assurances that we respected her decision. She left the hospital with home physical therapy and plans to see me in clinic as her new PCP.

However, two days before her scheduled appointment, she was readmitted to the hospital because the home care team found that her blood pressure was too low. She was admitted to the ICU where I was now rotating. Because of her persistent hyponatremia, Mrs. H was getting sodium checks every 4 hours and her IVs kept failing. Three nights into her MICU stay, the resident was attempting to establish another IV when Mrs. H had decided she had enough. And, she refused any central line.

The next morning I sat down with her for another long talk that culminated in a decision to focus on comfort care and spending whatever time she had left with her husband. We agreed that hospice was the best option and she asked that I speak to her husband over the phone about her decision. Mr. H was emotional but absolutely supportive and loving. We moved forward with comfort care and discharged her to hospice. Mrs. H expressed her gratitude for our relationship saying, “I know you have fought for me. I am just so amazed at all you have done. Thank you.” A week after discharge, she died at home surrounded by her loving husband and supportive hospice caregivers.

The deep connection that was established between our team and Mrs. H was evident by her trust in us. Her willingness to share her intimate fears and hopes marked a special connection that I will always cherish and remember. One of Mrs. H’s lasting impacts on me has been to help me to understand what it truly means to be a patient advocate. Sometimes it means fighting for a decision that you don’t fully agree with – but in so doing, you are fulfilling your duty to protect and honor patient autonomy.