Life and Death Decisions: How to Start the Conversation

Posted on 06/21/2013

Johns Hopkins Medicine Bulletin: Most of the people I know are planners: Planning where and when to bring their children into the world, what to eat, what to wear, what movie to see, what car to buy, what gift to give for birthdays. Everything is all carefully thought out. Plans are made about where to go to college, what job to take, what home to buy. Life, when you think about it, is a great collection of plans and the execution of those plans.

However, one plan that is often neglected by most has to do with the final stages of life, and the way that you may rise to the challenge of making and executing diffi­cult decisions presented by life-and-death struggles with cancer, heart disease, or dementia that await so many of us.

Most people, adults and their children, often delicately tiptoe around the topic, making sure to keep it off limits. Even after a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease has entered the picture, or when there is a real chance of death because of the advanced nature of a cancer, many still fear broaching the topic of what should be done during the last phase of life so it can be as meaningful as it can be. I have found that many people think that doctors will make the correct decisions whenever the time comes. Adult children often say nothing to their par­ents out of concern that a parent may think their children expect them to die soon.

Too many Americans spend the last days of their lives in a way they would never choose. As Virginia Morris, author of the book How to Care for Aging Parents, has noted, “It turns out that the vast majority of people in this country die horribly. Despite any living wills or promises made, they die in hospitals, surrounded not by loved ones but by ominous looking machines and strangers in blue scrubs. They die in pain, afraid, and alone. For the patient, obviously, this agonizing, lonely death is horrendous. But it is equally horrible for family members and other loved ones, who are left with lasting regrets, haunting memories, and insurmountable grief.”

Silence on end-of-life preferences is a contributing factor to this bungling of one’s final exit. For example, in a survey conducted by the California Health Foundation, 60 percent of people in that state said that making sure their family is not burdened by tough end-of-life decisions is “extremely important.” Yet, more than half of those surveyed had not communicated their wishes to anyone.

Too many times, the decision about what to do when death is imminent comes too late. Hong-Yee Lo, M.D., a Singapore-based surgeon once had such a patient, a very successful 39-year-old banker with an extremely aggressive cancer. The man was conflicted over what to do about his cancer, and because of his indecision, his case still haunts Dr. Lo to this day.

“He could have accepted palliative therapy and spent the rest of his time saying goodbye to loved ones,” says Dr. Lo, “or he could have tried very heroic treatment, something that was akin to grabbing at straws in an effort to stay alive. He opted for the heroic treatment but there was no happy ending for this patient because he did not have the opportunity, courage or the know-how to talk about his final wishes concerning care, treatment and survival.

“I felt very bad because I never was able to speak to him about the possibility of death and what it meant to him. He was uncomfortable talking about this, as was his wife. Even in the very last moments of his life, I feel like he never found peace and he suffered greatly.”

Dr. Lo was a young and extremely talented surgeon, and this particular case affected him so greatly that he wanted to give up his surgical practice. He has been determined to do something about this ever since. “I came to Harvard last year on a Fulbright Scholarship to pursue a masters in public health, and it was here that I heard about The Conversation Project. I jumped at the idea of getting involved. While my day job is general surgery, I have a keen interest in promoting end-of-life care, and in particular, helping people get over the discomfort of talking about death. That’s what The Conversation Project is all about.”

Ellen Goodman, a Pulitzer Prize-winning journalist, started The Conversation Project in 2010 after she found herself not knowing what to do to help her mother in her last years of life. Goodman had no idea what her mother, 92 years old and suf­fering from dementia, wanted for medical treatment and was completely unpre­pared to help her mother whenever a doctor called and asked about specific care-related questions and what she wanted to do. It was only after her mother’s death that Goodman realized how much easier it would have been for her if she had known what her mother would have wanted for herself.

“If only we had talked about it,” is something Goodman and Dr. Lo have heard too many times from too many people after the deaths of loved ones. It’s probably something you have heard or thought yourself. Ellen Goodman’s Conversation Project is now an increasingly popular national public campaign with a simple and transformative goal: to have every person’s end-of-life wishes expressed and respected.

Yes, it’s probably the hardest conversation for a family to have, but the discus­sion about what to do when you have lost your mind to dementia or are dying is also one of the most important that you can have. By having honest discussions with loved ones about how they want to spend their last days, Goodman believes that everyone will then be able to face death with a bit more wisdom and grace. Without the conversation, doctors will try to do everything they can to keep their patients alive.

When is the right time to have this conversation? I asked Dr. Lo. “It’s never too soon. But don’t wait until you are at the doctor’s office after you’ve received your prostate cancer diagnosis, or at the hospital, just before prostate cancer surgery. It’s best to start the conversation long before a healthcare crisis looms.”

End-of-life planning is often on people’s minds. You just have to be brave enough to get the conversation started with loved ones. “If you are a husband and want to begin the conversation with your spouse, start by first thinking it through. Decide what are your hopes and fears for how you want your life to end,” says Dr. Lo. “Are you fearful of being on a ventilator and being given too much medical assis­tance? Who do you want to make medical decisions for you if you are no longer able? If you are dying, do you want to be cared for at home, or should the hospital manage your care?”

If you are the spouse or child of someone with mild cognitive impairment, Dr. Lo says a good way to get the conversation going around the kitchen table is to say, “I am worried about what might happen if the MCI advances and I have to make medi­cal decisions for you. Please let me know what you want to do.”

“Once loved ones are able to have these conversations, people often choose less-aggressive care,” says Dr. Lo. “And survivors have less regret and depression.”

If you want to talk to your spouse or children about end-of-life wishes, but you’re not quite sure what is the best way to begin, then go to www.theconversationproject.org . “One rarely wakes up in the morning and decides that he or she is going to talk about death at the dinner table,” says Dr. Lo. “That’s where The Conversation web­site can help get the talking started. There is a free starter kit there that can show you ways to get you and your loved ones to start the conversation. You will be taught how to best phrase your questions: “What do you feel are the three most important things that you want your friend, family and/or doctors to understand about your wishes for end-of-life care?” Also included at the site are advanced care planning forms so you can easily document any decisions you want to make.

“When it comes to new ideas, it’s been said that one man is a lunatic, two men are a conspiracy, and three men are the beginning of a movement,” says Dr. Lo. “I really think that The Conversation is becoming an important movement that is pick­ing up momentum in the United States.”

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