The ICU doctor went over the patient’s test results and told him and his family the grim prognosis. Then palliative care nurse practitioner Peg Nelson leaned into the conversation.
“I’m so sorry that Joe’s dying,” Nelson told the family.
“Dying! He’s dying?” the family responded, obviously shocked. The family’s reaction to those words from Nelson, who is clinical director of the palliative care and pain service at St. Joseph Mercy Oakland in Pontiac, triggered another reaction, as well — but from the doctor.
As he and Nelson left the meeting, he turned to her. “I guess I have to use that ‘dying’ word,” he said. “You know, that’s so hard.” His sentiment is emblematic for many doctors faced with having “The Conversation” — the talk they should have with their patients who are nearing the end of life.
Many doctors have a hard time admitting their bag of cures is empty and find that helping their patients face their final transition, even though it can be a rich experience, very difficult.
Many families and patients want to avoid “The Conversation,” too, because it makes them feel like they’re giving up. They cling to the concept of viewing death as something they need to fight — at all costs.
Of course, it’s also often hard to tell when the end is coming.
Together, those kind of challenges at least partly explain why as late as 2006 a quarter of all Medicare payments were going to people who are in their final 12 months of life. Yet aggressive care used in the last year is not just costly, but it is also often associated with a worse quality of life for a patient and a poorer bereavement for the survivors.
That trend is changing. End-of-life issues are becoming part of the national conversation.
St. Joseph Mercy Oakland was one of the first hospitals in the country to be certified in palliative care — medical care to relieve symptoms and stress for people with serious illness.
Nelson says one indicator that the end is near is a series of crises during which a person responds to treatment but never fully recovers.
Books such as the best-seller Being Mortal, in part a memoir of Boston endocrine surgeon and author Atul Gawande’s father’s last months, point out the difference between a meaningful prelude to death and one spent seeking ever-more-elusive cures and enduring treatments that won’t help and can, instead, do harm.
A recent decision by the Centers for Medicaid and Medicare Services could help. Starting Jan. 1, CMS will reimburse doctors for having often-lengthy conversations like the one Nelson and her ICU colleague had with Joe and his family. Such payments were part of the original Affordable Care Act, but were scrapped amid cynical claims they would create death panels for the elderly.
Sometimes “The Conversation” can be too frank. For example, the daughter of one lung cancer patient wishes their doctor had responded differently when asked about good nutrition after getting the diagnosis in 2012.
“She said ‘I can’t cure this, so it really doesn’t matter what she eats,’ ” recalls Cathy Mott. “My mom says, ‘I don’t like her, she’s given up on me already.’ ”
The cancer took the older woman’s life 13 months later.
Mott, a Sterling Heights life and executive coach, and blogger at sipcoffeewithcathy.com, is the youngest of six children of former part-time nurse Monica Jones and Motown trumpeter Eddie Jones.
Mott previously worked with Nelson at St. Joe’s, and knew how skilled she is at managing such difficult conversations, so she turned to her former colleague for help.
“She handled things with my family and made it easy to talk about end of life,” Mott says.
But, nevertheless, she left the room when Nelson asked her mom, “Do you want to know what’s going to happen when you get close to death?”
That question sounds a lot like the “warning shots” Nelson uses to get “The Conversation” started. She described several of them over dinner at The Moose Preserve, in Bloomfield Hills, her smartphone always handy because her own mother is receiving hospice care in her home where, she said, she is “blooming.”
Other approaches include statements like “Gosh, you’ve got a lot going on,” or questions such as “Are you the type that wants to know all the details?”
If the answer is yes, Nelson progresses to: “I’m so sorry to tell you this,” or “We’re really worried” (also one of author Gawande’s conversation starters), or “I’ve got some bad news.”
Dr. James Boal, medical director at Angela Hospice in Livonia, is another veteran of end-of-life conversations with patients and families. He believes he has a natural ease and the experience to handle them well. He favors people letting their loved ones know what their wishes are, a point Gawande stresses in his book.
Angela Hospice encourages people to fill out a document titled Five Wishes, a user-friendly living will that “talks about personal, emotional, and spiritual needs, as well as medical wishes.”
The document is put out by the Aging With Dignity organization for people to record their end-of-life choices.
“You don’t have to wait until your health condition becomes dire,” Boal says, adding: “Plan what would happen if your condition deteriorated.”