This is a great weekend for it. The family is gathered and chances are that at least one member is in the late afternoon of life.
I was the family caregiver for my husband’s 17-year journey fighting multiple battles with cancer. Toward the end, I began writing a book called Passages in Caregiving. It was a mission of mine to make something positive out of our story by sharing the strategies we learned and the surprising joys we created.
I interviewed many Boomers who had not yet passed 65. Their approach to aging was simple. They were never going to let themselves get sick.
I did a survey of 10,000 Boomers, asking: At what age do you think you will be old?
Their answer: 79.
That average answer meant they would be suspended in a healthy mid-life for roughly thirty-five years. That’s a positive attitude, but what happens after 79, or even after 70?
The striking facts are that the average man is now living into his early 80s and women to 85. The hope was that people would live healthy a lot longer and die shorter. What’s happened instead is that people are living healthy a little bit longer and living sick a lot longer. During those long years of chronic illness, big decisions have to be made. Often, it’s not the patient making the decisions—it’s your family. And most families going through this feel alone and overwhelmed.
We are still largely in denial about aging.
Recently, however, I’ve seen a big change as early Boomers begin turning the corner to their 70s. Many now wonder: Who’s going to take care of me?
I participated recently in a national symposium on palliative care at the University of Indiana School of Medicine, where I was joined by one of the fathers of palliative care in a frank discussion about how Boomers can fuel the movement toward patient-centered care in the later years.
Dr. Tim Quill, Professor of Medicine, Psychiatry, and Medical Humanities at University of Rochester Medical School, is a board-certified palliative care consultant. He began his practice as a geriatrician long before palliative care existed—when the only comfort available for chronically or seriously ill patients and their families was hospice.
But hospice means you have to give up all medical treatment and sign up for a six-month deadline. Most people refuse to accept that finite deadline until the end is near. And many doctors, as well as the public at large, don’t know the difference between hospice and palliative care.
This is what you need to understand: Palliative care is for the long years of chronic illness – starting months or years before end of life. It offers the chance to end the debilitating trips to acute care hospitals that can’t cure them, and be cared for at home.
“You don’t have to be dying to get palliative care, “ Dr. Quill says. “You may even be cured and still benefit from palliative care. People are getting heart transplants and then getting palliative care. It helps maximize your quality of life, which everybody who is really sick needs.”
That’s why, if you’re hovering near 70, it is so vital to have The Conversation with your adult children. Or, if you have none, to approach a couple of trusted friends who may agree to be your legal representative in the event you can’t speak for yourself in a health emergency.
Otherwise, you may find yourself in the unfortunate position of a man in our public audience of 400 who posed this urgent question:
“Having lost both my parents to Alzheimers, I’ve learned that an advance directive means nothing. What can I do to protect myself from having the same experience that I had with my parents, so that my children don’t face the same helpless frustration?”
Dr. Quill was blunt in reply:
“I have talked to my children. They know how I feel and they know their job is to represent me. I’ve told them is that if I’m no longer able to make decisions for myself, I want morphine for everything. Hang nail, morphine. First snow of the year, morphine. They know that if they don’t do that, I will haunt them. I want zero treatment with anything other than morphine.”
The audience laughed in relief.
The takeaway was: Make sure people in your family know your views and values and accept that their job is to represent you. It’s not what they want. It’s what you want.
As I explained, it’s also hugely important that family caregivers give up the illusion she or he can do it alone. No one is a match for aging and disease. It takes a circle of care.
How do you create one? Reach out to your siblings first. Call them together for a fun occasion–a celebration of a birthday or anniversary or a major sports event. Ask each one to say what they do best. Who’s the one who can research the facts? Who’s the natural born social worker who can persuade the right doctor to be your medical quarterback?
Here are the three questions I asked to see if a doctor would sign up to be the medical quarterback in the long game of wrestling with my husband’s cancer:
1) Will you help us pick the team?
2) Will you call the plays?
3) Will you stick around to help us deal with the injuries once the treatment is over?
Dr. Quill backed me up here. “You absolutely need a medical quarterback,” he said. “It could be your primary care doctor, it could be your main treating specialist, it could be the palliative care doctor. But someone has to be coordinating all the different ways of treating the illness.”
An integrative approach may include a number of non-medical specialists—from a nutritionist to a physical therapist, a cancer therapist, acupuncturist, medical massage practitioner, etc.
Palliative care deals primarily with pain and anxiety management. And as long as a patient is in great pain, or is suffering from acute anxiety over when and how death will come, he or she will not be able to make good decisions about their care.
That’s where the palliative care conversation makes all the difference.
My husband and I beat three different cancers. We developed the illusion we would always be victorious. But the final recurrence of throat cancer required chemotherapy. It weakened his whole system. One common ingredient in the chemo cocktail produced neuropathy in his legs, numbing nerves so that he couldn’t keep his balance to walk. The combination of chemo and radiation paralyzed the swallowing mechanism in his throat.
What more could I do to help a man who was barely able to walk or speak?
One morning in the midst of a noisy coffee shop, I meditated. The words “palliative care” came across my mental screen. I had read something about a palliative care team at Mt. Sinai Medical Center in New York, where we then lived. I made a cold call. The geriatrician who heads the medical palliative care team answered the phone himself. Dr. Sean Morrison asked what was wrong. I told him my husband was free of cancer but suffering from repeated bouts of pneumonia. He refused to go back to the hospital.
“Good,” Dr. Morrison said. “The goal of palliative care is to keep people out of the hospital.” He said he would make a house call. I almost dropped my phone.
The first question he asked my husband was the game changer: “Clay, what is your goal for this stage of life?”
“My goal? This is a stage of life?” To Clay and I it was a revelation to think that he could have any control over this time of life.
Clay said, “I’m a journalist, my goal would be keep going out and seeing what’s going on.”
“We can make that happen, your wife and I,” the doctor said. “What else?”
“I’d like to walk again. That chemotherapy makes me wobbly.”
Dr. Morrison was honest. “We may not be able to make that happen, but we can certainly have you walking every day and improve your walking, with a wheel chair following for when you need it.”
That palliative care conversation introduced us to a year that would be Clay’s last–a year when treatment was matched to what Clay wanted and didn’t want.
Dr. Morrison was always a cell phone call away for emergencies, so that Clay never had to return to the hospital or a nursing home. The team included a nurse who made two regular visits a week and a social worker turned up on her scooter once a week to guide me in what to anticipate. We actually enjoyed one of the best vacations of your 24-year-marriage in that last year when I dared to take Clay with his feeding tube to Paris for a week.
That’s the power of palliative care, of having that conversation with your loved ones. It can return a sense of normalcy. As we discovered, normal is as normal does.
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