Demystifying Death: Compassionate, Practical Advice for Patients and Families

Did you know that when there is “no hope of recovery” there are still things for the patient to hope for?

Did you know that a “living will” is not a legal document in New York State or Massachusetts?  

Did you know that environmentalists have created nature preserves where you can be buried?  “What we are doing is basically land conservation,” says Dr. Billy Campbell, who has created a preserve along Ramsey Creek in South Carolina. “By setting aside woods for natural burials, we protect it from development. At the same time, I think we put death in its rightful place, as part of the cycle of life. Our burials honor the idea of ‘dust to dust.’”  Ramsey Creek is just one place where families can arrange “green burials.”

These are a few of the things I learned yesterday at a “Leadership Connection” lunch for women in business, politics and the non-profit sector.  There, New York Times health editor Jane Brody spoke about her new book : Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare, Medically, Legally, and Emotionally for the End of Life.

This might sound like a morbid subject, but in Brody’s hands it isn’t.  Let me put it this way: the book is illustrated with cartoons by artists who publish in the New Yorker. And Brody herself is, by turns, funny, pragmatic and sensitive to the pain that our death-denying culture causes  (“Dying can be an extraordinarily lonely experience for children when their parents do not allow the subject to be discussed.”) 

How Can Middle-Aged Children Talk About Death With Their Parents?

It turned out that several of the women at the lunch are struggling to reach out to elderly parents who are very sick.  In the discussion following Brody’s speech, they shared their concerns.  One woman explained that her mother is failing and that her father tells her that her mother is terrified of dying. “I’m going up there this week-end,” she explained. “How do I broach the subject?”

“Give her the book,” Brody replied. “Open the door to the discussion.” The book could break the ice. “But don’t think the reaction won’t be emotional,” Brody added. “It will be. You have to acknowledge the fear.” But ultimately, Brody’s book reveals, a dying parent and children need a chance to cry together. And to reminisce, laugh–and share the recipes.

This is something Brody learned, only after her own mother died when she was 16.  “My mother died of ovarian cancer,” she confided at yesterday’s lunch. “At the time, people didn’t use the word ‘death.”  Even though my mother was in a cancer center, they didn’t use the word ‘cancer.’”

“Twice in her declining months, my mother attempted suicide,” Brody recalled. “Once she slit her wrists; the second time she tried drinking rubbing alcohol. But neither occasion was used to open a discussion of what she was thinking and feeling, a discussion that might have relieved her desperation and made her remaining time on earth less awful.

“My father and I knew that she was dying” Brody added. “But by denying her death, we denied her the opportunity to say good-bye.”

Brody was only 16, and in her father’s generation few men knew how to talk directly about death—certainly not to their teen-age daughter or to their dying spouse. Brody suggests that her 12-year-old brother suffered the most: he never was told that his mother was dying, and so was given no chance to come to terms with something that was going to change his life irrevocably.

As for Brody herself, “I was so determined to be strong,” she recalls.  “By denying the reality of the situation, we denied her the opportunity to [talk about her life], to make sense of the life that she had lived and pass along her boundless wisdom as a lasting legacy. I never even got the recipes for the dishes she cooked so well. And believe me, I’ve tried to reconstruct them ever since.”

Brody recalled how angry she was with her mother’s younger brother, who cried when he visited her mother in the hospital. “How dare he cry in her presence,” I thought,” when what she needed most of all was hope for a recovery. It took me years to forgive him, years to finally learn that what she really had needed most was for all of to cry with her, to cry for the years of life she was going to miss, and for the years we all would miss being with her. “

Unless friends and family will talk about death, dying can be an incredibly lonely experience, Brody warns. “Even your doctor may disappear.”  Doctors are not taught what to say. “They have no script,” and so they stop visiting the dying patient.  This is another reason why patients need friends and family, not simply to grieve with them, but to remember a life well-lived. “It’s okay, even desirable, to talk about the past—about happy or funny times you shared with the person,” Brody writes. “Sharing memories lets a person know he or she will not be forgotten. It’s okay, even desirable, to laugh together.

“When my brother-in-law Gordon was dying of an asbestos-related cancer a few years ago, my husband and I visited him in his hospice room. My husband, who has a fabulous memory for events in the distant past, regaled him with stories of their childhood. And while it was difficult for Gordon to laugh, he did his best. It was obvious to us both how much he enjoyed the visit and the knowledge that he and the events of his life would not be forgotten. Too often, these memories are saved for the funeral or memorial service, when the person they concern is no longer around to hear them.”

Once a person accepts the fact that his disease is fatal, his last months do not have to be filled with misery. There are still things to hope for, says Brody—“that you will live long enough to see the birth of a grandchild, that the next day you will feel more comfortable and have a chance to sit outside and see the flowers, that your daughter will really like something you are leaving her.”  Though, Brody adds, “It  does help to ask.”  She recalls how her mother-in-law left her a treasured antique bed that was so rare that “it was impossible to find sheets that would fit it, and you even had to have a mattress custom-cut for it!”

Brody also tells the story of a patient who decided she wanted to live life to the max during her final months. She rejected chemo and instead, rented a house in the country and invited all of her friends to come, one by one. “These were very happy times, filled with laughter.”

At the luncheon, a woman spoke up to describe how she and her husband made a similar decision. “We had ten months from the time of his diagnosis to his death. We traveled, to Costa Rica, to California . . . .” Her voice broke, but clearly they had spent the time well.

Brody does not pretend that she looks forward to death. She reports that when her  grandson asked her if she would be alive to attend his wedding, she was honest: “I don’t know.” But, she confides “I did advise him to marry young.”

If, instead of denying death, we come to terms with it, Brody counsels, “we can make the end—for ourselves and for those we love—as peaceful and, yes, as enjoyable as it can be”.

Yet today, research shows that 40 to 70 percent of Americans suffer significant pain in the last days of their lives. For many, the fear of death is, at bottom, the fear of being swallowed whole by unbearable pain.

In part 2 of this post, I will talk about how pain can be avoided, greatly reducing the fear and suffering of death; the importance of making sure that your hospital offers palliative care, and finally, what physicians, families and health care reformers can do to   turn denial, dread and embarrassment into an acceptance of death as a natural part of the life cycle.

8 thoughts on “Demystifying Death: Compassionate, Practical Advice for Patients and Families

  1. It’s difficult to come to terms with one’s own mortality — especially when the health system treats death as a disease instead of an inevitable natural event. After all, “old age”, while entirely plausible as a cause of death, isn’t allowed on a death certificate.
    However, when both doctor and patient are able to come to terms with the inevitable outcome of advanced illness, it is important for the physician to realize they still play a valuable role.
    As you said, “Unless friends and family will talk about death, dying can be an incredibly lonely experience, Brody warns. ‘Even your doctor may disappear.’ Doctors are not taught what to say. ‘They have no script,’ and so they stop visiting the dying patient.” The next generation of doctors needs to be aware of this and adjust their approach to patient care accordingly.
    Pauline W. Chen serves as a good example of how physicians should treat terminal illness. Weeks after one of her patients passed away under hospice care, she recalls the following: “It was then I realized that I had done more. I had comforted my patient and his family. I had eased their suffering. I had been present for them during life and despite death. I had caught a glimpse of the doctor I could become.”
    Every doctor should follow this example, to the best of their ability, and care for their patients through those last moments.

  2. If terminal patients could be assured that they would not suffer and/or that they could end their own lives if things got too unbearable I think the amount of fear and the willingness to try “anything” would diminish.
    It is the lack of control over one’s fate that I think worries people. I don’t know the stats on doctor assisted suicide in the US and elsewhere, but I think the number of people actually exercising this option is quite small. It is just that they like the thought of the safety valve.

  3. Thanks Maggie- As I have said on this blog before this death and dying issue is THE single issue around which the profession of medicine, we as individuals and our young national US culture can finally mature.
    This issue trumps all else in importance from most perspectives.
    Dr. Rick Lippin
    Southampton,Pa

  4. Robertdfeinman, physician assisted suicide has been legal in Oregon since 1999. The number of people utilizing the option has gone from 16 (in 1999) to 60 (in 2008). Washington only recently legalized the practice, but one could presume that the rates will be similarly low.

  5. Great post, again, Maggie
    This is too important a subject to be buried
    A friend from England said to me after her husband was killed by an IRA bomb blast in the 70’s, “We laugh about the Victorians’ prudishness over sex, but we are equally shy in talking about death.”
    We can learn a lot from palliative care specialists that death is a learning journey, not failure.

  6. Thanks for a great post, Maggie.
    My father died last November. He had a horrible experience. His pain was not adequately treated, and his oncologist was distant, to put it mildly.
    Dad had primary liver cancer, that spread amazingly quickly. He died a week after diagnosis, and his only symptom before diagnosis was a gradual ascites that at first my parents didn’t realize was a symptom.
    Dad’s visit with his oncologist in the hospital consisted of the following statement, “You’re dying.” The man then left. Dad was devastated, and he died the next day.
    I am still angry about this. Dad died in terrible fear and pain, for no good reason, because his doctor couldn’t talk about dying.
    Two weeks later, I had to deal with the exact situation in my part time job for hospice. I went to the hosptial to visit a patient. The man was crying–his doctor had just been in, said, “Your cancer is spreading, no doubt to your many years of smoking,” and left.
    And to be fair, I’ve seen nurses who have the same difficulties showing compassion for the dying. They just leave the patient in the room, and make little effort to see to the comforts of the patients.
    Doctors AND nurses: please sit down with your dying patients. Try to avoid statements like the one said to my patient that blame the patient for their dying. They don’t need to hear this.
    They DO need to hear, “I will remain an active part of your caring team while you go through this process. I will do everything I can to help you stay comfortable, and help you keep your dignity, and to say your goodbyes to your family in your own way. I will support your decisions and your choices in how and where you die.”
    I say this to my hospice patients all the time. They get it. They appreciate it. And it is not really all that hard to say.
    OK, rant over. I feel better.

  7. Panacea, Aaron, Ken
    Thank you for your comments.
    Panacea–
    I am so sorry to hear about what happened to your father.
    Doctors who “disappear” when a patient begins to fail or who blame dying patients for dying really
    shouldnt’ be in the profession. (We will all die. And virtually all of us have done something over the course of our lives that hurt our body–if only by being too angry too often. )
    This is why I feel palliative care should be a required part of med school education. Medical students must learn to talk about death–and ultimately, to talk to dying patients.
    ADVICE FOR ALL PATIENTS AND FAMILY: If you, or a loved one is suffering from a disease that may prove fatal. try to find out if the hosptial has palliative care before being admitted
    Tell you doctor that you do Not want to go to a hospital that doesn’t have palliative care.
    Unfortuantely, in some parts of the country, you may have a harder time finding palliative care (especially in the South.)
    But if you can find a hospital with palliative care specialists, it would be worth going to a hospital that is two hours from home.
    Yes, it will be harder for friends and family to visit you. But they won’t be able to talk to you–or comfort you–if you are in horrible pain.
    If someone is controlling your pain, you can at least, talk to friends on the phone. And your loved ones will come to you.
    I hate to say this, but if you’re in terrible pain, your friends won’t want to visit you–even if you’re only 15 minutes away.
    Finally, if you or someone close to you is suffering from an illness that may prove fatal, ask to see someone from the palliative care team when you’re admitted to the hospital. Insist, if necessary.
    Remember, palliative care doesn’t mean that you are dying. (Hospice care is for patients who are dying and have decided to stop treatments for the disease.)
    Palliative care patients continue treatmens for the disease, but they also receive better pain control from people who know how to control pain without putting you in a coma.
    And the patient and family have someone who is willing to talk about the possibilty of death, the options for further treatment, the likely benefits and side effects.
    Ken–
    Yes, death may be the last taboo subject.
    Which can make death very, very lonely.
    Aaron–
    Counter to what so many “right to lifers” predicted, legal physician-assisted suicide has not led to an explosion of physician-assisted deaths.
    This is also true in placdes in Europe where PA suicide is legal.
    But I suspect that it is a great comfort to many people to know that if things become impossibly hard, they have that option.