(Dr. Riba is director of the psycho-oncology program at the University of Michigan Rogel Cancer Center. She chairs the National Comprehensive Cancer Network Distress Guidelines. This article, used under a Creative Commons license, was first published online on The Conversation.)
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On the morning of Easter Monday, after his final public address the day prior, Pope Francis died at 88, closing 12 years of leading the Catholic Church. He joins the phenomena of people “holding on” until after an anticipated date or event, such as the holidays or a birthday before dying.
It sometimes seems like some patients are able to stay alive out of sheer willpower. But for many people, behind the scenes is a village of people and an ongoing series of conversations that help patients be able to celebrate their child’s graduation or travel to a place they’ve always wanted to go. Meaning matters just as much as medicine at the end of life.
What factors come into play?
Psychosocial factors that affect a person’s mental health and well-being – such as stress, social support, depression and anxiety, and socioeconomic status – are important in all parts of life, but especially at the end. “End of life” refers to the days, weeks, or months after somebody is told they have a disease that can be fatal.
Questions about meaning and what’s important to a patient and their family are important at all times. But when someone is diagnosed with a grave illness, these questions become particularly important to acknowledge in medical conversations. As many doctors like to say, patients aren’t the disease – they have a disease.
We want to give patients control about how they live their lives, especially at the end. And this includes how they want to use their time, energy, and resources, who they want to spend their time with, and where they want to be.
Our mission is to share knowledge and inform decisions.
How does the “will to live” affect treatment and survival?
There was a new movement starting in the 1960s to ’70s that believed a person’s attitude and outlook could affect their health and longevity. People like minister Norman Vincent Peale promoted the idea that a positive mindset could help improve outcomes. Psychologist Martin Seligman developed the field of positive psychology that focused on subjective well-being by promoting resilience and human flourishing. The idea that you could do better if you were optimistic resonated with many people, including physicians.
Then surgeon Bernie Siegel proposed the specific idea that staying positive after a cancer diagnosis could extend your life, and that became a major focus. However, there was little to no data to support his claims. The studies researchers conducted to verify that people who were more positive lived longer, or had a lower prevalence of cancer, were either flawed or did not consistently show this effect.
Eventually, Siegel’s ideas were disproved. But for a long time, they affected how patients felt about themselves and how their families addressed illness. My own patients would tell me, “How can I be positive? I can’t eat, I’m in pain and I’m sick.” They felt guilty that they couldn’t feel upbeat and optimistic, and that caused extra stress and reduced their quality of life.
Additionally, the social determinants of health – like a patient’s environment, race, education and wealth – are also important to their health and longevity. Having a good social life, money, and not being discriminated against makes it easier to stay positive and do better. During the COVID-19 pandemic, people were less likely to do well if they didn’t have money, or were a certain race.
Research shows that patients who have severe mental illness (such as schizophrenia and bipolar disorder) often live about 20 years less than someone who doesn’t. And it’s not just because of the disease. Having a severe mental illness means that you probably can’t work, don’t have financial means, and you may not have family support.
How can doctors help patients feel like they have more control?
In studying how patients could feel more confident, physicians like me realized that having control over their destiny, if you will, didn’t necessarily mean patients had to stay positive. Rather, it meant understanding the things that gave them joy and meaning before their diagnosis, and how clinicians could help them continue to do these things.
For example, a patient who could no longer work because of cancer or treatments might miss their sense of routine. Working with them to make a schedule of their medical appointments and enjoyable activities might help them take control over their days. The structure may provide meaning and help them cope better.
A marathon runner who loses their ability to balance due to a brain tumor is another example. If this patient found meaning and pleasure in running, what could we do to help them regain some of this joy? It might look like starting physical therapy and rehab, or finding alternative activities they can do.
If going to their place of worship is important to a patient, but they’re no longer able to, we could see if their rabbi, imam, or minister could see them at their home.
Additionally, helping patients continue doing what’s meaningful also gives hope. It helps them know that their physicians feel they’re worth trying for – and there’s life beyond cancer treatment.
How do a patient’s goals factor into their treatment plan?
When doctors give someone hope, patients tend to have better outcomes. That doesn’t mean we’re telling them something false, or that they’re going to live longer. Rather, doctors can help them improve or maintain their quality of life and achieve certain goals.
For example, a patient may be thinking of attending their child’s graduation two months from now. Their care team can talk to them about how they might be able to do this, or think of other ways to celebrate.
My mother passed away from cancer a month after I graduated high school. I remember she couldn’t participate in many senior prom activities, like helping me get a dress or do my hair. But my date and I, and another couple, went to her hospital room before the prom so she could see us all dressed up. And it was one of the most meaningful moments of my life. Though she couldn’t attend graduation or other preparations and celebrations, it mattered to Mom that she could see my friends and me. Also, very meaningfully, my friends were so kind to make that effort on our behalf.
Some patients with terminal illness manage to hold on past a certain holiday or date. One study found that the number of Jewish people who died before Passover was lower than expected, and the number of deaths afterward was higher than expected. While this study had flaws and limitations, other researchers have made similar observations for deaths for specific groups after Christmas, the Mid-Autumn Festival, and birthdays.
But this research doesn’t address whether specific holidays were actually what these patients really cared about. It may be that people made it through something else they found important. Maybe they were able to be with people they loved at the end. It may be something else entirely. We don’t really know.
Allowing patients and their families to think about what matters most and how we can help them achieve their goals is part of our job as physicians.
How to balance a patient’s medical care with their goals?
Being diagnosed with a terminal illness can be traumatic. Patients often remember where and when they heard the news about a certain illness or scan. How to help people process, understand, and best live with this is the key to having optimal quality of life. This means giving them choices and helping them see ways to address it for themselves and their families.
Sometimes that can be really hard. For patients who want to travel, we might figure a way to defer specific treatments or procedures, or set up appointments for them to be done at a distant hospital or clinic. But there’s not much we can do for a patient who wants to attend a child’s wedding some decades in the future. We do everything we can within reason, and try to make sure patients and their loved ones understand the risks and benefits.
Doctors and patients may also have different goals that can be hard to meet at the same time. Figuring how to juggle agendas, and listen to each other, can be challenging but important.
Everybody is trying to do what they think is right and best for the patient. This means taking care of the whole person, not just the disease. Whether that means reaching a certain holiday or special event, or just gathering with the ones they love, taking the time and effort to understand what is important for the patient and their family is key to good care.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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Nice! Practical and realistic. My mother-in-law turned 100 in February. There was a huge party planned for her in June. She was in good health and enjoying her full life but she had long been saying she was prepared to die without regrets when her time came. In March, her heart started going crazy and the cardiologist said that she could get a pacemaker (not minor surgery at age 100) or she could be dead within 3 months. She REALLY wanted that party she said, so she chose the pacemaker. She lived over 3 more years in good health. Would she have chosen the pacemaker if that party hadn’t been on her near horizon?