Category Archives: Empowerment

Reflections on Death and Dying: On the Importance of End-of-Life Conversations

End of life decision making is hard. End of life conversations are hard. They require, among other things, acknowledgement of the inevitability of death. In American culture, we are often not comfortable with that, even in the last precious moments.  I have had these conversations with my children since they were adolescents. They know if there is no hope I can be myself again, I don’t want any extraordinary measures taken. They know quality of life is more important to me than quantity of life. They know I wish to be an organ donor. They know I wish to be cremated. We have negotiated where my ashes will be spread when they’re ready to spread them. I hope that when the situation arises, this knowing will make things easier for them.

End of life is a personal matter for the person dying. It is also a community matter, a family matter, one that impacts and is influenced by loved ones who will be left behind. Dying happens in relationship, and the members of those relationships often have very different outlooks. In relationship, some are more or less ready to let go than others. Some are clearer on outcomes, more realistic about expectations. Some hope for miracles, that things are not as bad as they seem. Some hope that something can yet be done.  Some have strong beliefs and preferences. Health care providers are often less helpful than they could be about prognosis at these times, or, perhaps, loved ones hear, in providers’ words, what they have the ability to hear.

Death happens in relationship.

My father died over a decade ago. The memory of his last days is still as vivid today as it was then. For the last days of his life, all five of his children were by his side. My brother fixing things around the house, my sisters and I taking turns caring for Dad with in-home hospice support, all of us supporting Mom.

Because I could, it fell to me to have the end of life conversation with my Dad. Dad was already in hospice care, so extraordinary measures were no longer a question. What he wanted after death was. It was hard to make myself have this conversation. It felt final, like an acceptance of his inevitable passing. My heart hurt.  But I believed it was important. I believed that if he had desires, they should be honored if possible. I’m a crier at the best of times, and I didn’t want to cry when we had this talk. I finally decided that my crying didn’t matter and that I would do the best I could.

One afternoon, when he was having a good day, a particularly alert, pain-free moment, I climbed up on the bed next to him. “Dad, can I talk with you about something?”  I asked. “Sure, honey”, he said. “What would you like to have happen after?” I asked. He seemed surprised by the question. “After what?” he asked. “After you’re gone”, I replied, stroking his hair. “Would you like a funeral Mass? Would you like to be cremated or buried? Would you like to be buried here or in Westfield (Indiana, his birth home)?” “Do you think we need to talk about that now?” he asked. “We can… Or we can wait… Whatever you want…. I just wanted to offer you the chance to tell me if there’s anything particular you’d like.” “Well, I haven’t thought about it.” he said. I waited, quietly. “Well,… I asked Dick to be a pallbearer… So buried, I guess. I never thought about cremation… I don’t want to be far away from your Mom or Jennifer, so I think buried here is best… I’d like a 21 gun salute and the presentation of the flag at the cemetery. And I’d really like you to sing “Bridge Over Troubled Water” at the funeral. Aside from that, it’s up to you all.” “Dad, I don’t think there’s any way I’m going to be able to sing at your funeral.” I laughed. “I can be the lector at your Mass, though and do the readings. Would that be ok? I promise I’ll find someone to sing for you.” “Ok. I hope we don’t have to worry about this for a while yet”, he said. “Who do you want me to notify after you pass?” I asked. He listed family and friends, some old co-workers. “I think your Mom has all their numbers”, he answered. “Ok.” I said.

The first question was the hardest. As the conversation unfolded, each question got easier to ask. We got more comfortable talking with one another. We still held these issues in the realm of the future, even though it was clear that the future would not be long in coming. I snuggled into his side for a while longer. We were just quiet, together.

Later, I told my mother, sisters and brother what Dad had said. I asked if there was anything they wanted to have happen. I asked if anyone wanted to help me plan things. I made a list of who I needed to talk with and did some preliminary research on funeral homes. I talked with his parish priest and with people at the cemetery. We contacted the military to see what was needed in order to plan the 21 gun salute. We made a list of people we needed to call with phone numbers. I asked Mom who she wanted to call and who she wanted me to call.

When Dad passed, we moved quickly. This was not an easy time, but it was easier because we all knew Dad’s wishes and everyone had been able to have input into planning his funeral and burial. My task was simply to carry out my Dad and our family’s wishes to the best of my ability.

Having had this conversation in advance saved distress and disagreement after Dad’s death. Had we tried to make decisions then, without knowing his wishes, I am certain our heightened emotional state would have made things much more difficult. As it was, everything went smoothly and according to plan. I was lector for Dad’s funeral Mass and selected the readings myself. A young woman with a lovely voice sang “Bridge Over Troubled Water” as we left the church for the cemetery, where Dad received the requested 21 gun salute, and Mom was presented with the American flag.

Because death happens in relationship, end of life conversations are important. Not easy, but important. End of life conversations smooth the way for both the person passing and those left behind. Conversations that might not have happened otherwise can happen. Decisions that might be contentious later can be less so because the wishes of the person dying are known. I do not assume that all the conversations I have had with my children will prepare them for my death. I do not assume even that I will feel the same when the time comes that I do now. I do believe that we at least have a starting point for decisions, a roadmap should we never have the opportunity to revisit these topics.

In our culture end of life conversations are often awkward and uncomfortable. It helps if we can make them more routine. It makes it easier when we know a loved one’s wishes. End of life conversations protect the desires and preferences of the person dying and the feelings and relationships of those left behind.

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.

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.