part0036

Helen was a patient about whom I was warned. Colleagues had told me so many stories about her that I wasn’t expecting us to get along. But it didn’t take me long to admire this strong-willed woman. Helen was full of spunk. She was a no-nonsense woman who didn’t beat around the bush. She had a similar expectation of me. “Just get to the point,„ Helen would tell me as my earnest explanations took lengthy and tangential turns. There was never any worry that you didn’t know what Helen was thinking. She was forthright – using language that would set your hair on fire.

I first met 51-year-old Helen after receiving a phone call from the nurse who worked at our satellite clinic. This clinic provided health and social services to people living in an attached supportive housing unit. Helen had been there for 18 months and had been using our services intermittently during that time. I was being asked to assess some burns she had received to her ear and neck after accidentally setting her hair on fire while smoking a cigarette.

When I reached Helen’s apartment I was met by the strong smell of nicotine. Helen was smoking when I entered the room and introduced myself. Disheveled, with missed button holes on her shirt, her shoelaces untied, and with food stains on her skirt, Helen held her head up high, put her hand out and introduced herself with confidence. Her arm waved grandly with her choreiform movements, and her words were hard to understand. There was a huge burn oozing with pus on the side of her head. I managed to catch her hand, and we held on to one another with a firm grip, staring at each other in the eyes. I think she was daring me to look away. But, I didn’t look away. “It’s lovely to meet you Helen,„ I said. She smirked.

Helen had been formally diagnosed with Huntington’s disease two years ago, but she didn’t need to have doctors tell her this. She knew the symptoms all too well. As Helen told me in one of our later visits: “My mom died like an animal in one of those jails they call a nursing home,„ and her sister was nearing a similar fate. Dying in a nursing home terrified Helen. “Over my dead body. I won’t go to one of those places. No way!„ Helen announced with steely determination.

Helen not only posed a safety hazard to herself but to others in her building. She was likely to burn the building down with her unsafe smoking habits. The landlord had given her an eviction notice. Helen was fast on her way to becoming homeless. The health care team involved in Helen’s care had a month to think of other possible solutions before her eviction date. Unfortunately, it was the middle of winter, and it was cold outside.

Helen could not manage on her own. Although she was aware of this, she was too proud to admit it to anyone. So, she coped by being creative and resourceful. Helen often offered shelter to others in exchange for help with activities of daily living. This often put Helen in unsafe positions, but she felt the benefits of this independence outweighed any risk of harm.

Understanding the proximal and distal contexts of Helen’s life allowed me to better understand her struggles and her choices. Clearly, Helen’s biggest fear was losing her independence. She had lost control over her physical body (her bowels, bladder and many voluntary movements) and was holding onto her “marbles„ with every ounce of energy she could muster. As Helen put it, “I will not wait until I go nuts„ – alluding to the inevitable dementia and psychiatric sequelae of Huntington’s.

With this increasing understanding of Helen’s situation, I began to realize the comfort that Helen derived from our visits in the quiet safety of my office. Sometimes we would just sit in silence – silence that was eventually interrupted by Helen’s patience being tested: “Aren’t you going to say something?„ Trust with Helen was hard-earned but helped to establish the early phases of our relationship. I reminded myself that trusting someone can make them feel more vulnerable and open to being hurt.

As we got to know one another better, I felt that there was increased trust between the two of us. I asked more personal questions, and Helen spoke more about her past. I began to appreciate just how challenging it had been for her to watch her mother’s health fail and to witness her mother become more and more dependent on Helen and her father. “She had lost all her pride at the end,„ Helen told me. Despite this increase in trust, our relationship was always tenuous.

Helen was becoming increasingly stubborn – she was refusing any assistance from home care and the Huntington’s society. In fact, she refused almost all assistance. Pride can have its price. My concern revolved around Helen’s increasingly volatile mood and poor memory. At our last visit, she could not remember the date and had forgotten my name. She was also not wearing clothes appropriate to the cold weather outside. Although her mini-mental status exam was 20/25, I was quite concerned that her disease, in addition to her personality, was interfering with her judgment and poor insight. Helen refused a psychiatric assessment, making it difficult to elucidate just what level of neurocognitive impairment she was suffering.

The situation culminated into a crisis when Helen left her supportive housing unit as her eviction day was fast approaching. She decided that she was better off without any of us and “our talk of nursing homes.„ “I’d be better off dead in a snow bank!„ she shouted to staff as she walked out the door of her apartment building. Into the cold, wintery day she went, with only a rusty shopping cart and a sleeping bag. She had no money. We assumed that she had gone off to her usual hang-out, a local homeless drop-in. It was cold enough outside that if Helen did not find a safe indoor place, she was at risk of dying.

I made the difficult decision to certify her under the Mental Health Act, ultimately forcing Helen to get a psychiatric assessment, even if it was against her will. I needed a second opinion. I tried to convince myself that my intentions were ultimately in her best interests and not self-indulgent.

It was one of those miserable moments as a physician. As soon as she saw me she started swearing and swatting at me. The police had to block the doors to prevent her from leaving and then she simply collapsed and sat on the floor. It was a difficult and heart-wrenching situation. Helen had trusted me and I felt like I had betrayed her. The patient-doctor relationship that had taken so long to build had shattered in a matter of moments. She looked bewildered and hurt. Helen was taken to the hospital, assessed as “competent„ and discharged back to the streets. Helen refused to see me or any other members of her health care team again.

The subtle and complex behavioral changes in Huntington’s disease made assessment and management of Helen difficult. What part was Helen’s innate personality, and what part was the disease? Could the two really be separated, and was her behavior clinically relevant? I struggled with the issue of Helen’s ability to understand and to appreciate her situation fully. Although she was found competent, Helen had many symptoms consistent with cognitive decline. Even if she did have early dementia, did I have the right to act against her wishes?

Do I regret certifying Helen? I don’t think so. I do regret that it happened in a way that made her feel demeaned and disempowered. Those are moments we don’t forget as physicians. I am not sure how it could have happened differently though. The line between individual autonomy and protection of life is murky at best. Are these concepts as irreconcilable as they feel? Physicians struggle to minimize the influence of their power in their relationships with patients. However, as Helen reminds us, our power can feel overwhelming and subsume the relationship.

Many feelings arise when I think about Helen. Above all, I have admiration for her. While suffering from a horrible illness, she was able to maintain a fierce pride. She had a strong will to live – just on her terms.