Topic:

CONVERSATIONS

In This Session:

Story about Janet
She was 46, a wife and a mother. But with that doctor's office visit, the university professor became one more member of an aging nation forced to wrestle in words with her own mortality.

There is no way around the reality of death and dying. But Americans are learning that end-of-life conversations can be a pathway leading them to a better way of dying. The end of life, say experts, need not be all angst and agony, but a time of surprising personal growth.

About the Author:

Dale G. Larson, Ph.D. is Associate Professor, Department of Counseling Psychology at Santa Clara University. A clinician and former Fulbright Scholar, Dr. Larson has published extensively in the end-of-life, counseling, and health psychology areas. He is the author of The Helper's Journey: Working With People Facing Grief, Loss, and Life-Threatening Illness.

Readings:

It’s time to talk: Most important conversations are the hardest to have

By Dale G. Larson 

     It was a conversation Janet Fossett never expected or wanted to have: The doctor was alarmed. The cancer in her breast had reached an advanced stage. And it was spreading.
     She was 46, a wife and a mother. But with that doctor’s office visit, became one more member of an aging nation forced to wrestle in words with her own mortality.
     As Janet was about to learn, even though these conversations can be grueling in their candor, advocates say they can also bring dignity to dying and a precious sense of control. But while Americans say they want quality at the end of life, they avoid the discussions that make dying well possible.
     “I was very scared,” said Janet, recalling the day in April 2000 when she was diagnosed with stage III breast cancer. By the time her doctors detected it, the cancer had spread to her lymph nodes.
     “I was scared of what test results would show, scared of having drugs injected into my veins, scared of major surgery, scared that I would soon die,” she said.
     Perhaps most of all, Janet was scared of talking about it. She’s not alone. Most Americans dread these conversations. Physicians avoid them. Patients are reluctant to ask the very questions that would help them plan for what lies ahead. Relatives try to “stay positive” or have no idea what to say.
     Janet quickly found herself the center in this conspiracy of silence. 
     “My fears made it hard to function,” she said. “I had to push myself to do what I knew I had to do: learn about my illness, find good doctors, undergo tests to determine how far the cancer had spread.”
     Through conversation, Janet found a path through her fears: She understood her illness. Her doctors helped hammer out treatment options. As she later realized, Janet had taken the first steps on what she would call her “breast cancer journey.”


     In physicians’ offices, living rooms and community meetings across the country, people are learning how to break the silence. As America’s burgeoning baby-boomer generation will soon find out, it’s a three-step process: 
     When they’re well, they can draw up so-called “advance directives,” a formalized game plan for end-of-life medical care, including a living will and a durable-power-of-attorney form.     
     When serious illness strikes, a double set of conversations can kick in: one with health professionals to address not just the medical but the emotional and social needs of the patient. The other is with loved ones, whose support can make even the roughest end-of-life journey manageable.  
     Finally, when death draws near, conversation ascends to an almost spiritual state. By sharing the realities of dying, fear and denial can be replaced by intimacy and growth, a passage through the ultimate window of opportunity.
     “Having direct talk, even about threatening issues like dying and death, can be reassuring,” said Dr. David Spiegel, director of Stanford’s Psychosocial Treatment Laboratory. “It makes people feel connected, rather than isolated. So an intimate conversation about death can soften the terror.”
     Studies back that up. One survey by Dr. William Tierney of Indiana University found that patients came away happier from doctor visits where advance directives were discussed. Further down the road, conversation becomes even more crucial. It is here that perhaps the most crucial discussion takes place — how to move from cure to care, from the so-called “curative” stage of treatment to the “palliative,” or comfort, stage where hospice help could eventually be considered.
     The drive to get people talking, though, can be complicated by cultural considerations.
     Each culture has its own set of rituals and taboos concerning death, and each varies in the extent to which its members can discuss death openly. But in the end, the decision always comes down to the individual. 
     And “it’s your values that are most important in deciding if a treatment is right for you,” says Dr. Laura Esserman, director of the University of California San Francisco’s Carole Frank Breast Cancer Clinic. She advises patients “to remember the treatments and services are for you, not the physician.”


     Talking to her doctors, Janet said, was tough. But the conversation that followed was agony.
     Janet and her husband Jim knew their son Jeff, 9, would soon pick up on the frantic phone calls and skyrocketing anxiety in the house. How do you tell your own child that your life is in jeopardy?
     For Janet, the answer began with a book. Janet and her husband met with a social worker in Boston who gave them “How To Help Children Through a Parent’s Serious Illness.” As Jim drove, Janet read aloud on their way back to New York.
     “We learned a lot on that two-hour drive,” said Janet. “We knew we couldn’t delay the conversation any longer, that we needed to be truthful and use the ‘C’ word.”  
     They got good advice: Keep it simple. Stress that cancer’s not contagious. Assure Jeff that he had not, somehow, caused the illness. “Most of all,” said Janet, “we needed to assure him he would always be loved and cared for. By the time we got home, we had a plan.”
     Jim and his son shot hoops in the driveway. Sitting on the front steps, Jim braced himself, then told his son what the doctors had found.
     “You know how Mommy has been having lots of tests?” asked Jim.
      “Well, it turns out Mommy has breast cancer.”
     “Really?” said Jeff.
     “Yes. But the doctors in Boston have good ideas about how to treat it. Mom and I can tell you more about it later.”
     Jeff asked a few brief questions. 
     Then he changed the subject.
     Later that evening, Janet drew Jeff a bath. She was on her knees with sleeves pushed up to the elbow. As Janet leaned over the tub, Jeff suddenly asked: “Mommy, are you going to die?”
     Janet closed her eyes and took a deep breath. 
     “Actually,” she began, “I really don’t know. I’ve got great doctors and they’re going to help us figure out how to treat my cancer. I sure hope I don’t die. And I want you to join me and Daddy in hoping for this, too.”
      It was the talk she dreaded, “the most frightening conversation of my entire life,” she called it. And even then, it didn’t include all the upsetting details — her treatment plan included chemotherapy, a mastectomy, radiation and hormonal therapy. But as dreadful as the conversation had seemed beforehand, it was over and done with in a heartbeat. 
     “I worried whether we’d fumbled these initial conversations,” she said later. “But we were sure that talking about this stuff with our son was better than not talking about it.”
     But it was just the first of many conversations to come, conversations that continue today, 17 months after her cancer was diagnosed, as Janet struggles to live the fullest life possible in a lifetime still impossible to measure.
     Said Janet: “If I should develop stage IV cancer, which is so often eventually fatal, then I guess we’ll find ways to talk about that as well.”


     There is no way around the reality of death and dying. But Americans are learning that end-of-life conversations can be a pathway leading them to a better way of dying. The end of life, say experts, need not be all angst and agony, but a time of personal growth.
     Americans are clear in surveys about what they want as they die: Maintain dignity. Be comfortable. Say good-bye to important people. Make peace with whatever higher power they choose. What they may not know, though, is that the healing power of these challenging conversations is one of life’s greatest gifts. A few words — words perhaps never before uttered — can lift the burden of a lifetime of disappointment, of a shameful personal secret, of an unexpressed love. 

     In everyday words, it can sound as simple as this: 
     I forgive you. 
     Please forgive me. 
     Thank you. 
     I love you. 
     Good-bye.

     Janet Fossett is not ready to say goodbye to anyone. But if her cancer worsens, as it could well do, she already has learned the lexicon that will help her find a way to live with dying.
     “I’ve recently begun writing a little bit about my life, things I’d like my son to know,” she said. “No matter what may happen to me, this will be a part of myself that I can always share with him.”
     In her education, Janet has had some powerful teachers — from authors to webmasters, social workers to medical specialists, and most of all, family and friends. Her time facing death has enriched her life in many ways.
     “No one knows what the future holds,” said Janet. “But this uncertainty is also a gift that allows us to be hopeful for my future.”
     As she moves into it, she takes with her the greatest lesson of all.
     “I learned,” said Janet, “that I did not have to face these conversations alone.” 


     © 2001, Partnership for Caring, Inc.
     Distributed by Knight Ridder/Tribune Information Services.

Tips:


Here are tips to help you talk to doctors, loved ones and yourself:

  • Know your stuff: Research your disease and bring a detailed list of questions to your doctor (see below). If you need support, bring along a friend or family member. Ask to tape record the medical interview so you can remember all the details of the conversation.
     
  • Build teams: When you talk to your doctor, nurses, social workers, clergy, and other care-providers, think of them as colleagues, all interested in the same thing: helping you live your life to the fullest in the time you have left.
     
  • Learn from others: Call up a local hospice or hospital to find nearby support groups or educational programs for people facing the same medical or caregiving challenges.
     
  • Share experiences: Get your group, say church or senior center, to discuss the experiences (good and bad) that members have had with friends and family who have died recently.
     
  • Plan proactively: Discuss a treatment plan for your remaining time with your loved ones. Discuss your medical options (living will and health care proxy) and desired funeral arrangements. Give your doctor a copy of your completed directives.
     
  • Don't waste time: Share with your loved ones what you'd like to do with the remaining time in your life--travel, getting together with old friends, for example. Be realistic, but set down your plans in detail and take action.
     
  • Tie up loose ends: Think about what the unresolved issues are for you with your family, and what you can do to achieve some closure. For example, tell someone you forgive him or her for a past conflict. Get closure for the unfinished parts of your life.
     
  • Tell your story: Make a video or audiotape for your children or grandchildren, telling them stories of your life and candidly sharing your feelings for them. 
     
  • Write it down: Think of writing as a conversation with yourself. Writing about your life in its final stages may not cure your illness, but finding words to describe what you're feeling can be emotionally comforting and help you find meaning.
     
  • Look for the window of opportunity: If your illness worsens and you are trying to balance life-prolonging treatments with your quality of life, it might be time for you to consider dying as the next stage of your life. The more you talk with others and prepare, the more likely you will be able to maintain control and dignity and achieve a sense of peacefulness in the time that remains.

Discussion Questions:

  1. The article describes three different points in time--when we are well, when serious illness strikes, and when death draws near--and the different kinds of conversations that can be beneficial at those times. Discuss these and other end-of-life conversations that can be helpful and healing, and in what time periods these might take place.
  2. What are some of the barriers to end-of-life conversations in modern medical care? Discuss barriers that might exist in physicians (e.g., fear of depressing the patient), in the health care system (e.g., lack of time allocated for health providers to actually talk to patients), and in patients and family members (e.g., fear of being overwhelmed or making things worse) that contribute to this conspiracy of silence.
  3. Discuss Janet and her husband's decision to discuss her medical situation with their son. What are some of the concerns--valid or not-- that might keep parents from sharing this information with their children? What are the pros and cons of disclosing information about a personal serious illness with friends and coworkers? Finally, what are some of the unique kinds of support that might be obtained by attending a support group for people with a similar health problem?
  4. What might you do now to make sure that these kinds of conversations occur if you or a loved one develops a life-threatening condition? Have you taken any preliminary steps to complete advance directives, to develop good relationships with your physician and other health care providers, and to address unfinished business in your relationships and incomplete life tasks and goals? What might be some steps you can take in those directions at this time?

Points and Observations:

Janet is extremely involved and informed concerning all aspects of her medical treatment.  We know that some people prefer to approach these situations in this way,  while others prefer to be a bit less involved and to exert less control over their medical care, turning much of the control and decision making over to their physicians and other health providers.  Which style describes you best?  What are the advantages, and possible disadvantages, of this style?

Janet and her husband Jim found a way to tell their son Jeff about Janet's condition that was not overwhelming for him and that opened the door to future conversations.  It is usually not a question of whether to talk about these difficult topics with one's children,  but rather how and when to do so.  What did you think and feel while reading about the conversations Jim and Janet  had with Jeff  in the driveway and in the bathroom?  What did you learn from these very poignant conversations and Janet's reflections on them?

References and Resources:

  1. Albom, N. (1997).  Tuesdays with Morrie: An old man, a young man, and the last great lesson.  New York: Doubleday.   In this bestseller, Mitch Albom describes conversations with his former professor Morrie Schwarz as Morrie navigates the dying process.  This is probably one of the  most inspiring statements of the gifts that conversations at the end of life can afford to the dying, their family, and friends.
  2. Byock, I.  (1997).   Dying well: The prospect for growth at the end of life.  New York: Riverhead Books.   This book tells the stories of dying patients and their families who in the face of tragedy and conflict are able to achieve reconciliation, love, and meaning at the end of life. These  people  provide great models for how to deal  with doctors and how to talk to friends and relatives.
  3. Doka, K. J. (1993).   Living with life-threatening illness: A guide for patients, their families, and caregivers.   New York:  Lexington Books.   This book identifies the tasks of living with dying and offers practical suggestions for patients, families, and caregivers to assist them to meet the challenges of life-threatening illness.
  4. Larson, D. G., & Tobin, D. R. (2000).  End-of-life conversations: Evolving practice and theory.   Journal of the American Medical Association, 284, 1573-1578.  Written for health professionals, this article examines the evolution and need for end-of-life conversations. Barriers to end-of-life discussions are identified and strategies for enhancing them are suggested, including specific communication skills for physicians.
  5. Lo, B., Quill, T., & Tulsky, J. (1999).   Discussing palliative care with patients.   Annals  of Internal Medicine, 130 (9), 744-749.  Written for physicians and other health professionals, this article offers practical suggestions for sensitively implementing  end-of-life conversations , including how to discuss  palliative care issues while disease-remitting treatments are continued without creating a  perception of abandonment.
  6. Lynn, J., & Harrold, J. (1999).  Handbook for mortals: Guidance for people facing serious illness.  New York: Oxford Press. A lay publication, this book offers practical information and counsel concerning the decisions people face, the choices available to them, how to talk to your doctor, and  how the health care system operates. Personal stories show how others have faced their fears and made their choices.
  7. McCue, K., & Bonn, R. (1996).  How to help children through a parent's serious illness.  New York: St. Martin's Press.   Offers practical advice for parents facing serious illness concerning how to help children age 3 -19 cope with their pain and fears (e.g., such as those relating to being the cause of a disease, to contagiousness, to the loss of a parent's daily support, and to death) and move toward a healthy future, regardless of the outcome of  the parent's illness
  8. McNees, P. (Ed.). (1998). Dying: A book of comfort. New York: Warner Books. This fine anthology gathers passages from more than forty thinkers, writers, and religious figures from different faiths. These life-affirming passages offer profound insights into the emotions surrounding death and give voice to many of the feelings dying and grieving people have. This book can help people begin to find the words that exactly capture what they are going through.
  9. Tobin, D. R. (1999). Peaceful dying: The step-by-step guide to preserving your dignity, your choice, and your inner peace at the end of life. Cambridge, Mass: Perseus. Presents a 26-step program to return control and peace to those entering this stage of life and to help all involved–the dying, their families, and healthcare providers. Offers many examples of conversations that can assist patients and their families to address practical concerns and to achieve peace and dignity at the end of life.
  10. Vitez, M. (1998). Final choices: Seeking the good death. Philadelphia: Camino Books. This Pulitzer Prize-winning book examines the kinds of choices people face as they seek to retain control and to achieve a high quality of life at the end of life.
    McNees, P.  (Ed.).  (1998).  Dying: A book of comfort.   New York: Warner Books.  This fine anthology gathers  passages from more than forty thinkers, writers, and religious figures from different faiths.  These life-affirming passages offer  profound insights into the emotions surrounding death and give voice to many of the feelings dying and grieving people have. This book can help people begin to find the words that exactly capture what they are going through.  

Links:

Aging with Dignity
The Five Wishes Project
Offers advance directive forms that can be used by residents of 33 states.
1-888-5-WISHES 
www.agingwithdignity.org

AARP 
AARPs End-of-Life page. Offers information on having end-of-life conversations.
601 E St., NW 
Washington, DC 20049 
1-800-424-3410 
www.aarp.org/mmaturity/sept_oct00/conversation.html 

Partnership for Caring: America's Voices for the Dying

It's All About Talking page.
PFC Publications Publications Office 
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
www.partnershipforcaring.org/Talking/index.html