I lost a dear friend to brain cancer recently. Sally* was a beautiful, intelligent, energetic 61-year-old woman who was full of life, joy, and compassion. She had a wonderful marriage. She was involved in the community, and she had a wide circle of friends. She still had so much she wanted to do and give, and her death was a tremendous loss to all of us who knew and cared about her.
Sally received excellent medical care following her diagnosis, but last spring, after enduring a year of aggressive treatments, an MRI revealed two new tumors in her brain. It became evident that surgery, radiation, chemotherapy and steroid treatments were not to going to defeat the cancer.
Her doctor told her the only remaining options were brain cancer clinical trials, but unfortunately, Sally didn’t qualify for free trials because of the new tumors. As far as I know, Sally’s doctor never said, “There’s nothing more we can do,” and she didn’t refer Sally to hospice care until 10 days before her death.
Going into hospice care six months earlier would not have changed the outcome, but it certainly could have made the last several months of life more comfortable for Sally and more manageable for her husband and sister, who were her loving, attentive (and exhausted) caregivers.
Tough Conversations About Death: Do All Doctors Have Them with Their Patients?
I understand and respect the fact that doctors are trained to cure diseases and prolong life. Until I read Dr. Atul Gawanda’s book, Being Mortal , I sometimes thought doctors were reluctant to refer patients to hospice because end-of-life care can be extremely lucrative. After all, tens of thousands, and sometimes hundreds of thousands of dollars are spent on aggressive treatments in the last few months of people’s lives – even when there is no chance of recovery.
However, Dr. Gawanda explained that there are other reasons doctors avoid talking about death with their patients, starting with the fact that medical schools don’t teach their students how to have these conversations. Death is an uncomfortable topic, and it requires a certain amount of finesse to ask the right questions, and then a considerable amount of time listen to patients in order to learn what matters most to them when they are facing the end of their own lives.
If our physicians aren’t comfortable having these conversations, then I believe it becomes incumbent on each of us to educate ourselves about hospice care and then record our wishes in our advance directives so that no one who cares about us will ever have to guess about our choices when it comes to managing our end-of-life care.
Ten Facts About Hospice a Lot of People Don’t Know
According to the National Hospice and Palliative Care Organization, there are ten facts about Hospice that a lot of people don’t know:
- Hospice is not a place—it’s high-quality care that focuses on comfort and quality of life.
- Hospice is paid for by Medicare, Medicaid, and most insurance plans. Fear of costs should never prevent a person from accessing hospice care.
- Hospice serves anyone with a life-limiting illness, regardless of age or type of illness.
- Hospice provides expert medical care as well as spiritual and emotional support to patients and families.
- Research has shown that the majority of Americans would prefer to be at home at the end of life—hospice makes this possible for most people.
- Hospice serves people living in nursing homes and assisted living facilities.
- Hospice patients and families can receive care for six months or longer.
- A person may keep his or her referring physician involved while receiving hospice care.
- Hospice offers grief and bereavement services to family members to help them adjust to the loss in their lives.
- Research has shown people receiving hospice care can live longer than similar patients who do not opt for hospice.
When a person goes into hospice care, the primary goal is to help them manage their pain and maintain their dignity throughout the final months of their life.
The Benefits of Hospice Care
If Sally’s doctor had referred her earlier, our local hospice could have provided an interdisciplinary team of professionals who would have met once a week to discuss her condition and determine what types of services would have been most helpful to Sally and her family.
She could have met with a medical social worker who could have provided personal therapy in addition to connecting family members with resources in the community. A nurse could have come to the home on a regular basis, along with a trained medical assistant who could have helped her bathe, dress, and manage other activities of daily living. She could have had access to people who provide spiritual guidance, massage therapy, music therapy and even pet care. Volunteer respite caregivers could have stayed with Sally for a few hours a couple times a week so her husband could get away long enough to run to the grocery store, go for a walk, or get his hair cut.
When I asked Dawn Hemstreet, a former oncology nurse who works for Willamette Valley Hospice in Salem, Oregon, why she thought doctors are sometimes reluctant to refer patients to hospice, she said, “Fear of death is a very real thing, and even though we all know we’re going to die, we’re often in denial about it. In this culture we don’t discuss death.”
She went on to say that during the years she worked as a nurse with cancer patients and oncologists, she learned to respect each person’s journey. She said, “Some people are willing to submit to any treatment and suffer through any side effects in order to extend their lives, even if it’s just for a few more months. Others will say, ‘I’m done with treatments. I want to enjoy the time I have left, and I’d want to spend it with family and friends rather than in doctors’ offices and hospitals.’”
How to Start Difficult Conversations about End-of-Life Choices and Hospice Care
In his book, Being Mortal Dr. Gawanda described a conversation he had with Susan Block, a palliative care specialist who is an expert at conducting difficult conversations about end-of-life choices. Block suggested that rather than asking patients to choose between treatment options, that doctors should strive to learn what really matters to them. She has a list of questions she asks her patients when she meets with them to discuss life-prolonging treatments. They are:
- “If time becomes short, what is most important to you?
- What do you understand your prognosis to be?
- What are your concerns about what lies ahead?
- What kinds of trade-offs are you willing make?
- How do you want to spend your time if your health worsens?
- Who do you want to make decisions if you aren’t capable of making them yourself?”
These are not easy questions, but as Dr. Gawanda states, “People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come – and escape a warehoused oblivion that few really want.”
The Good News About End-of-Life Counseling
There is some encouraging news that may make it easier for patients and doctors to discuss treatment options and outcomes in the near future. In July, 2015, Medicare announced plans to reimburse doctors for conversations they have with patients regarding end-of-life choices.
According to a recent article in the New York Times, the final decision will be made by November 1. The plan would allow doctors, nurse practitioners, and physician assistants to be reimbursed for face-to-face meetings with patients and their relatives and/or caregivers.
Dr. Patrick Conway, the chief medical officer for the Centers for Medicare and Medicaid said at this point the proposal did not limit the number of conversations a patient could have with his/her medical professional about end-of-life choices.
He said, “The reality is these conversations, their length can vary based on patients’ needs. Sometimes, they’re short conversations – the person has thought about it. Sometimes, they’re a much longer conversation. Sometimes they’re a series of conversations.”
The plan is expected to be approved and to take effect in January, 2016. However, it will be open for public comment for 60 days, and the discourse between political opponents could once again become heated and contentious. Hopefully, politics won’t derail this critically important benefit.
Saying Goodbye to a Friend
When I first started writing this article I was angry with Sally’s doctor for not referring her to hospice last spring. After rereading Dr. Gawanda’s book and talking with Dawn Hemstreet with Willamette Valley Hospice, I’ve come to the conclusion that Sally’s doctor may have tried to talk to her at some point, and it’s also possible that Sally just wasn’t ready to quit fighting for her life.
I do know that she did not end her life in “a warehoused oblivion.” She fought a courageous battle against a glioblastoma tumor, and she lost. But she never lost her positive attitude, or her appreciation for others. She lived a beautiful life and she died in her home with her husband and sister — the two people she loved the most, by her side. That may be the best possible ending anyone could ever hope for.
None of us has a choice about whether we will die, but it’s encouraging to know that if we’re diagnosed with a life-ending illness, we can choose how we want to manage the process. It’s an intensely personal decision, and it’s great comfort to me to know that hospice is an option, because if I’m ever in that situation, I know I will want all the help I can get.
Elaine K Sanchez is a caregiver speaker, the author of the unflinchingly honest and uproariously funny book, “Letters from Madelyn, Chronicles of a Caregiver. She is the co-founder of CaregiverHelp.com, a program that helps family and professional caregivers cope with the anger, guilt, depression and grief associated with caring for those who can no longer care for themselves. She and her husband, Dr. Alex Sanchez, have developed a number of online continuing education courses for mental health professionals. The courses are hosted on PDResources.com.
*Names and identifying details have been changed to protect the privacy of individuals.