Tag Archives: Health Communication

On the Importance of Support for Health Care Surrogates: The Middle of the End of SOB (Sweet Old Bill)

One day, each of us will die. I have come to believe that Dylan Thomas had it wrong when he argued that we should “Not go gentle into that good night”, that we should “Rage, rage against the dying of the light”. I now believe that going gentle into that good night is sometimes the definition of a good death. So many factors go into a good death, particularly in a culture as death averse as ours. I cannot say whether or not my uncle had a good death. I can say that he met death on his own terms. That, however, is a topic for another day. Today I want to talk about the people who made the role I played as his health care surrogate easier, because being a surrogate in the U.S. still often means dealing with a medical establishment bent on raging, on defeating death. As I helped my uncle navigate the end of his life, I was fortunate to have three strong advocates supporting me.

My maternal aunt (my uncle’s sister), a nurse, helped me stay clear when I doubted myself or my choices. She reinforced the importance of my role as my uncle’s health care surrogate, and commiserated with all the craziness I faced when dealing with insurance companies, medical providers, long-term care and rehabilitation facilities, our family, and my uncle’s friends. She let me rant. She let me cry. She listened and advised. To my aunt, I say “Thank you for your compassion, your calmness, your willingness to troubleshoot with me, your clarity, your unwavering confidence in me, and your kindness. Doing this without you would have been so much harder.”

My second support person was my friend Andrew who was there for me because he loved me. He asked the hard questions and supported me in making the tough decisions. He helped me stay clear, encouraging me to write things down, so that I would have my own words to help me sort through issues as they arose, so that when my decisions or motives were questioned, I would have clarity for myself. I wrote. Reading what I wrote at various points helped me to remain strong in supporting my uncle’s wishes. To Andrew I say, “Thank you for your insight, your  intelligence, your compassion. Thank you for holding me as I cried, for driving me to the airport, for picking my up from the airport, for bringing me flowers, for loving me through this difficult time. You are a treasure.”

My third support person was the case oversight doctor at the rehabilitation hospital. He became my lifeline. He reinforced my uncle’s right to decide, made me aware of what I would face as I advocated for my uncle in the rehabilitation hospital, and helped me negotiate the care decisions we faced. To this physician, I say, “Thank you  for helping me reach and maintain clarity, for helping me understand the mindset and motives of health care providers, for preparing me for all the challenges I would face, and for fortifying my commitment to “stay the course”, even when making a different choice would have been easier.”

As I’ve said, I’m a health communication scholar. My academic and personal work prepared me to serve as my uncle’s health care surrogate as he negotiated the end of his life. I had over two decades of my own research. I had my experiences with colleagues and friends from the Nevada Center for Ethics and Health Policy. I had tools others may not have as they take on this role. These resources didn’t change the fact that I continually and painfully second guessed myself throughout this process. They didn’t prepare me for who I was as a person, a niece, helping someone I loved in the process of dying. They didn’t prepare me to negotiate this process with health care providers, family, and friends. My second guessing came mostly from the reactions of my family, my uncle’s friends, and medical providers who disagreed with my uncle’s decisions or questioned my motives. I’m a conscientious person. If people question me or my motives, it kicks me into a process of self-reflection, looking for chinks in my commitment, in my motives. My support people made this process and all the decisions associated with it bearable.

I’m going to spend the rest of this entry talking about the case physician in the rehabilitation hospital. He and I never met in person. Through several phone calls, he understood that my uncle did not want to do anything to prolong his life: no medications, no surgeries, no hospitalizations, no invasive treatments. He also understood my uncle’s desire to be as healthy as he could for the time he had left. The doctor agreed that continuing to regain or at least maintain his strength and physical capacity through physical therapy and occupational therapy were appropriate. He also recommended speech therapy to assess whether there were any swallowing or food management issues that could be improved. He helped me stay logical and pragmatic in the face of significant resistance from health care providers.

I remember at the end of one conversation he told me that this was not going to be easy. He told me I would have to stay strong in the face of well-meaning health care providers who thought my uncle’s decisions were wrong. He told me that well-meaning health care providers would try to “gaslight” me. I asked what he meant. He said, “They will identify crises that will require more extensive medical procedures and hospitalizations. They will want to call ambulances and administer emergency treatments to save or prolong your uncle’s life. They will call you at all hours of the day and night with emergencies you need to make decisions about right then. They will not want you to take time to think”. He concluded, “No matter how they gaslight you and how urgent the emergency they present you with, you need to go down your decision tree. Given his decision and your commitment to advocating for it, except for keeping your uncle comfortable and pain free, you aren’t going to do anything else. Right?”. “No”, I answered, “Good”, he said. “You’re clear. Stay that way. Call me any time you if you need me. I’ll call you when I need you”.

He was right. Nurses called me at all hours of the day and night. The preferred time seemed to be 3 a.m. and each emergency required my approval of immediate hospitalization. Sometimes they called 911 in direct contradiction to the “no 911” directive. Twice they called to inform me that ambulances were on the way. In both cases, I refused them. The first time the nurse said, “That’s what your uncle said. We hoped you’d have more sense.” His advance directive paperwork was misplaced multiple times. The post-it notes the case physican left to reinforce the directives in his chart were either removed from the chart or the workstation, or accidentally covered up, leading to the ordering of multiple tests and procedures I had to then refuse. Late one night they called to tell me my uncle was having mini-seizures. They wanted to hospitalize him for tests. On another occasion, they thought he was throwing blood clots and that the circulation in his right leg had been cut off. On both occasions, I was lucky that the case physician was available to talk me through the crisis. He asked if I would allow surgery. He asked if I would allow any treatment beyond pain medication. My answer was “No”. The physician concluded, that it didn’t matter then if my uncle had had a stroke. Observation would confirm that diagnosis or not. It didn’t matter if he was throwing blood clots or if the circulation in his leg had been compromised. Again, observation would eventually confirm whether or not this was the case. Since we weren’t going to accept any kind of treatment, the diagnosis didn’t matter. Helping me work through the decision path, it became clear that to support my uncle’s wishes, all treatments had to be refused. He helped me understand that the health care providers in the rehabilitation hospital were only doing what they believed best, trying to prolong my uncle’s life.

These situations led me to repeatedly question my uncle’s desire to “let nature take its course” and my desire to support him in that decision. Was this the time? Could he still live a high quality life – if only we did this or that intervention? My experience as a health communication scholar and the support of my advocates allowed me to stay the course in each case, as did my uncle’s unwavering commitment to the path he’d chosen. As loved ones of those who are dying, our hope often leads us to accept medical intervention that will not prolong a quality of life and often only minimally lengthen the duration of life. Being a health care surrogate at end of life is not easy. It is, however, critically important in a culture that is death averse and within the context of a medical establishment that views death as a failure. Sometimes it is appropriate to rage against the dying of the light. At other times, it is a gift to allow a loved one to go gentle into that good night.

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Reflections on Death & Dying – The Beginning of the End of SOB (Sweet Old Bill) – Part 2

In July and August 2013, I supported my uncle, William Leo Pence, as he died. It was my chance to be there for a family member I loved. It was also an opportunity to put into practice my beliefs about human dignity, choice, and the power to make our own decisions and have them respected at the end of life.  It was one of the most grueling things I’ve ever done.

Born November 19, 1928, my uncle was a veteran of the Korean War. He stood 6’6” tall and his personality matched his height. Eight years before his death, he’d had a kidney transplant, but aside from that, and low level medications for slightly elevated cholesterol and blood pressure, he was very healthy. He was bright, independent and active. And, as Frank Sinatra would say, he liked to do things his way.

Once he took himself off all his medications, including the anti-rejection drugs for his kidney, he thought he would die quickly and peacefully. He put his affairs in order and went home to wait. (If you are reading this blog for the first time, the introductory post to this story can be found here: https://dballardreisch.wordpress.com/2014/10/14/the-florence-journals-reflections-on-death-and-dying-the-beginning-of-the-end-sobs-story-sweet-old-bill/) Unfortunately, will is not always the same as outcome, and what my uncle thought would take days, took more than a month. During that time, he gave me his durable power of attorney and I became his health care surrogate. Technically, he shouldn’t have needed a health care surrogate. He had spelled everything out very clearly. His advanced directives were in order: No invasive measures. No lifesaving interventions or life extending treatments. He wanted to live as fully as possible for as long as he had. He just didn’t want anything to make that longer than it needed to be. He did want to continue speech, physical, and occupational therapy so that he could be independent as long as possible. He wanted to live the highest quality of life he could.

During this process, my uncle made a mistake that almost took choice out of his hands. It had been a long, trying day. He was tired. He was uncomfortable. He was bored. He was fed up. Taking himself off medications had not led to the quick, painless decline he had anticipated. He wanted to talk with someone he thought would understand what he was feeling, but who wasn’t personally invested in his situation. He called 911. He wanted to tell someone that would understand that he was ready to die.

My uncle lived in Florida and his admission to a health care professional that he was ready to die led to his emergency admission into the hospital under the Florida Mental Health Act of 1971, the Baker Act. The ambulance came to my uncle’s house, took him to the hospital, and kept him for the full 72 hours allowed by law. He was furious! Unbeknownst to him, in Florida, it is considered against the interests of the state for an individual to be ready to die. The powers that be see it as a small step from being “ready” to die to committing suicide. The Baker Act required that he be assessed by a psychiatrist to determine if he was potentially dangerous to himself, someone else, or whether he had a mental illness. The key question was whether he was a suicide risk. Had they seen him as suicidal, the doctors told me that would have overridden his advanced directives even if he had been considered sane when he made them.

At the hospital, he rallied and convinced the psychiatric staff that he was not suicidal. However, without consulting us, they put him on medications to stabilize his mood and treat what they saw as depression. Now that they were convinced that he was stable emotionally, the question became what to do with him. After the 72 hours, they had to commit him or release him. He could no longer walk unaided and had very little strength. His insurance didn’t cover 24 hour nursing care. His friends, who were in their 80s, couldn’t care for him now that he was largely immobile. I lived 1300 miles away. He couldn’t go home. The doctors told us that they could not send him to a rehabilitation hospital unless he showed them that he wanted to get better. Because his test results were still so good, they didn’t think his decline was steep enough to warrant hospice care. The idea that he wanted to be as healthy and capable as he could as long as he lived, yet refused to take medication was confusing for medical staff. After much discussion, his doctors decided to give him a physical therapy consultation which would determine whether or not he could be placed in a rehabilitation hospital. My uncle used every bit of strength he had and cooperated fully with the PT assessment. They found him compliant, cooperative, and committed to building his strength. They decided to send him to a rehabilitation facility. Now if was my job to find one.

The Florence Journals: Reflections on Death & Dying – The Beginning of the End of SOB (Sweet Old Bill)

On July 4, 2013, Bill declared his independence. In the early 2000s, he’d had a kidney transplant. Aside from that, he was an extremely healthy 84 year old. As with most older adults, in the United States, though, he was on multiple medications to manage multiple minor chronic issues. That’s really context for our story. Approximately a year and a half earlier, after his wife’s death, a series of minor mishaps, literally missteps, started the journey that would lead to his declaration. He needed to have several toes removed due to poor circulation, causing significant mobility issues. Recovering from this, he contracted a virus that put him to bed for several weeks. When he was well again, he was extremely weak and needed to build strength to walk again. He got to the point where he could use a walker or a cane to haul his 6 foot 6 inch frame around, and ultimately take several steps unaided. However, his strength and vigor did not return. This frustrated Bill, an extremely independent man.

One evening he stepped on something sharp. He couldn’t see or feel what it was, but his foot bled profusely. His neighbor and good friend Dino, who had been his support person, particularly with activities of daily living, would be over the next morning to assist him, so Bill just put on a Depends, wrapped his foot in a towel and went to bed. The following morning, Dino found him this way, blood soaked towel wrapped around his injured foot, soaked Depends, his friend needing assistance. Dino cleaned Bill up as best he could, washing him, slathering his foot with antibiotic ointment, and bandaging his foot. The bleeding had stopped by then. Dino made Bill breakfast. Bill, not being one to lie idly by, fussed and grumbled about not being able to get around, but Dino persuaded him to stay in bed that morning and give his foot a rest.

The next day, Bill was still in pain and couldn’t put weight on his foot; Dino cleaned and re-bandaged it for him. This happened the next day and the next and the next, until the fifth day when Bill awoke with a fever and Dino recognized that Bill’s foot was infected. Dino called an ambulance to take Bill to the hospital.

Whether the toe removal, the virus, the item Bill stepped on that led to the infection, or the spiral of medical issues set in motion at the hospital when Bill arrived for treatment for his foot were singularly or collectively the last straw, for those who knew him, Bill’s July 4 declaration of independence quickly became a predictable conclusion. Bill was a proud man, an independent man. He’d been in the medical corps during the Korean War. He was not comfortable relying on others.

At the hospital, an inexperienced physician disregarded the information that Bill had had a kidney transplant and prescribed an antibiotic that disrupted his kidney functioning. He told Bill he was sorry, but they would need to do minor surgery to repair the damage. Bill took matters into his own hands, requesting a psychiatric consultation. After a 45 minute consultation, Bill asked the psychiatrist if she thought he was competent to make his own medical decisions. She responded “Absolutely!  I have no questions at all about your competence. Why do you ask?” Bill replied, “Because as of today I am taking myself off all my medications. I am also refusing this surgery to repair the damage caused to my kidney by the antibiotics and I don’t want anyone to be able to challenge this decision. Now, please get a piece of paper, we’ll write out each of my medications. I will sign that I refuse to continue them and you will sign that I am competent to do so”. Surprised, the psychiatrist did as Bill requested.

Bill remained calm and resolute as several medical professionals tried to talk him out of this decision. He was done with medical care. With signed paper in hand and fresh advanced directives and against his doctor’s advice, Bill was wheeled out of the hospital. His trusty friend Dino was there to take him home. Bill believed that he would die quickly as he thought that taking himself off the anti-rejection medication for his kidney would lead to his body rejecting the kidney, causing it to shut down. He believed he would die quickly and painlessly. That was not to be the case.

When Bill left the hospital, he believed he was going home to die. His two friends Dino and Kenny disagreed with Bill’s decision and it took him several days to bring them around to at least understanding his way of thinking. Once they were grudgingly on board, Bill called me, his niece, and told me of his decision. I listened quietly. We both shed a few tears. I told him I loved him and would miss him, but that I would fight for his right to decide. Neither of us knew what this would ultimately involve. But our trust and commitment to one another, and to Bill’s right to make this decision, strengthened our resolve to face whatever came next.

Bill got his affairs in and went to bed to wait.

The Florence Journals: Reflections on Death and Dying – Who am I in this Conversation?

When I started this writing journey in Florence, Italy, there were things I wanted to write and things I needed to write. This is the first of a series of posts that represent one topic from the latter list. They will deal with my perspective as a health communication scholar on end of life care, focused largely around my uncle’s death in 2013. This first post outlines how I came to this conversation personally and academically. I thought you should know from the outset, who I am in this conversation. For me, there has always been a strong relationship between the personal and the professional as you shall see. The following posts in this series will include academic critiques, personal narratives, and insights on how to negotiate end of life and advocate for self-determination and personal decision-making. 

In 1986, when she was 15 years old, my youngest sister was diagnosed with Acute Lymphoblastic Leukemia. She is a survivor who today is happily married with 4 children. That said, much of my sister’s battle with leukemia illustrated for me what is wrong with the US health care system. I had just developed my participative decision-making model for physicians and patients which would ultimately be published in 1990 (1) and in an expanded version in 1993 (2) when my sister was diagnosed.

As an academic, my first response is always research. So, when I flew to Florida to meet with my sister’s oncologist for the first time following her diagnosis, I was ready with questions about alternative treatments, success rates, the role of nutrition in enhancing her ability to overcome the cancer, treatment side effects, and so on. My first question after my sister’s oncologist outlined what I thought were his treatment recommendations was “What other alternatives do we have?” He replied, “You could leave.” That stopped me short. After a long pause, I replied, “I’m sorry. I don’t think you understood me. I’m asking what other treatment options are available for this type of leukemia.” He repeated, “None that I recommend, so if you don’t want to do what I advise, you are free to seek treatment elsewhere.” I was stunned. So much for collaborative decision-making. It quickly became clear that for my parents, there would be no options, no alternative treatments considered. This doctor was “the best”; they were going to put my sister in his hands.

I spent as much time in Florida with my sister as I could, traveling back and forth from Reno as my teaching schedule allowed. I remember on one trip, my sister asked me to play in the swimming pool with her. I used to be a pretty good diver. Back flips were my specialty. After doing several of those and making her laugh, she asked me to do a front flip. I don’t know why, but front flips have always been more of a challenge for me. I tried repeatedly over what felt like hours to do a front flip, stinging the backs of my legs a bright red. That night after dinner, we were snuggling in her bed and I quipped, “Well, since I clearly can’t do a front flip, what else can I do for you sweetie?” She said “Write about us. You’re the writer in the family. Write our story.” So I did. I interviewed my parents and my sister and I wrote their story. I didn’t include my voice as I wanted to empower theirs. I was “in and out”. I wasn’t part of the day to day. That journey was theirs. I co-authored what became a book chapter with my sister on her story and that of my parents. (3) I also wrote a companion chapter on the disenfranchisement of families coping with adolescent cancer (4).

In late 2001, my father became ill with what was diagnosed as terminal cancer. He was given 6 months to live. He died on June 27, 2002. My family was together for the last 2 weeks of his life and I took on the responsibility of talking with him about his final wishes and making arrangements for him. While not easy conversations, I think he appreciated my willingness to have them, including planning his funeral. The only things he wanted were to be buried in the local cemetery. He’d asked that his lifelong friend Dick be a pallbearer, and he wanted me to sing the Simon and Garfunkel song, Bridge over Troubled Water. Given the circumstances, I told him I knew I wouldn’t be able to sing. I did agree to do the readings at his funeral Mass though, and I was able to work through the church to find a young woman with a lovely voice who agreed to sing. The song was sung, my father’s wishes honored.

During those last two weeks, hospice was also with us around the clock. They were a blessing. They explained the dying process, what we could expect, choices we had to make, like allowing my father to stop eating, pain medications, etc. The only place we strongly disagreed and I could not win was over pain medication. As his condition deteriorated, the pain medications wore off more and more quickly. I spent the last 3 days of his life, until the afternoon of the day he died, on the couch in the living room next to his hospital bed. I dozed there and woke to administer his pain medications every 2 hours. When he dozed, I dozed. When he was restless or awake, I was awake. We talked. We held hands. I brushed his hair. I was there for him. The problem came in that I was not permitted to dose him more frequently than every two hours. Some of those two hour periods were brutal. For me, there was absolutely no reason for my father to feel any pain. I believed his pain medication should be “as needed”. For the hospice workers, the fear that he “might become addicted” held greater weight.

Shortly after my father’s death, I coauthored an article with Joyce Letner about centering families in communication research about cancer, outlining specific premises and strategies to support families in coping with cancer management (5).

You probably see a pattern here. My personal life often informs my academic work in health communication, or vice versa. While many other projects and lines of research over the next 10 years impacted my preparation to support my uncle and advocate for his wishes as he went through the process of dying in the summer of 2013, I was not fully ready. For this experience acting as his advocate, I have learned a great deal about negotiating end of life and health care decision-making which may be useful to others. I will write about those in future entries.

One important thank you. I am indebted to my colleagues at the Nevada Center for Ethics and Health Policy, at its height, a cutting edge think tank where medical, communication, public health, and theological experts brought their insights to bear on promoting advanced planning and quality of life decision-making at end of life. Through their inspiring work over years, I embraced more fully the notions of self-determination in health decision-making, the critical role of communication in health care, and patient empowerment. These insights served me well on this journey. So, I thank the kind, gentle, Reverend Noel Tiano, director of the center, and my insightful, brilliant colleagues who taught me the importance of advocacy, Drs. Barbara Thornton, Greg Hayes, and Craig Klugman.

Bibliography of my relevant publications referenced in the above:

  • Ballard-Reisch, D.S. (Spring, 1990).  A model of participative decision making for physician-patient interaction.  Health Communication.  2(2), 91-104.
  • Ballard-Reisch, D.S.  (1993).  Health care providers and consumers:  Making decisions together.  In B. Thornton and G. Kreps (Eds.).  Perspectives on Health Communication.  (pp. 66-80).  Prospect Heights, Ill: Waveland Press.
  • Ballard-Reisch, D.S. & Price, J. (1996). Separation and oncology: Copying strategies of a family dealing with leukemia. In E. Berlin-Ray (Ed.). Case Studies in Communication and the Disenfranchised. (pp. 75-86). Hillsdale, N.J: Lawrence Erlbaum and Associates, Publishers.
  • Ballard-Reisch, D.S. (1996). Coping with alienation, fear and isolation: The disenfranchisement of adolescents with cancer and their families. In E. Berlin-Ray (Ed.). Communication and the Disenfranchised. (pp. 185-208). Hillsdale, N.J: Lawrence Erlbaum and Associates, Publishers.
  • Ballard-Reisch, D.S. & Letner, J.A. (May, 2003). Centering families in cancer communication research: Acknowledging the impact of support, culture and process on client/provider communication in cancer management. Patient Education and Counseling, 2074, 1-6.