The news was bad. Mimi, a woman in her early 80s, had been undergoing treatment for lymphoma. Her husband was being treated for bladder cancer. Recently, she developed chest pain, and a biopsy showed that she had developed a secondary tumor of the pleura, the space around one of her lungs. Her oncology team’s mission was to share this bad news.
Mimi’s case was far from unique. Each year in the U.S., over 1.6 million patients receive hospice care, a number that has been increasing rapidly over the past few years. What made Mimi’s case remarkable was not the grimness of her prognosis but her reaction to it.
When the members of the team walked into Mimi’s hospital room, she was lying in bed holding hands with her husband, who was perched beside her on his motorized wheelchair. The attending oncologist gulped, took a deep breath, and began to break the news as gently as he could. Expecting to meet a flood of tears, he finished by expressing how sorry he was.
To the team’s surprise, however, no tears flowed. Instead Mimi looked over at her husband with a broad smile and said, “Do you know what day this is?” Somewhat perplexed, the oncologist had to admit that he did not. “Today is very is special,” said Mimi, “because it was 60 years ago this very day that my Jim and I were married.”
The team members reacted to Mimi with astonishment. How could an elderly woman with an ailing husband who had just been told that she had a second, lethal cancer respond with a smile? Compounding the team’s amazement, she then went on to share how grateful she felt for the life she and her husband had shared.
Mimi thanked the attending oncologist and the members of the team for their care, remarking how difficult it must be to deliver bad news to very sick patients. Instead of feeling sorry for herself, Mimi was expressing sympathy for the people caring for her, exhibiting a remarkable generosity of spirit in the face of a grim disease.
The members of the team walked out of Mimi’s room shaking their heads in amazement. Once they reached the hallway, the attending physician turned and addressed the group: “Mimi isn’t the only person in that room with cancer, but she is surely the sickest. And yet,” he continued, to nods all around, “she is also the healthiest of any of us.”
“Be thine own palace, or the world’s thy jail.”
– John Donne
Disease need not define us
Mimi’s reaction highlights a distinction between disease and illness, the importance of which is becoming increasingly apparent. Simply put, a body has a disease, but only a person can have an illness. Different people can respond very differently to the same diagnosis, and those differences sometimes correspond to demographic categories, such as male or female. Mimi is a beautiful example of the ability to respond with joy and gratitude in the face of even life’s seemingly darkest moments.
Consider another very different patient the cancer team met with shortly after Mimi. Ron, a man in his 40s who had been cured of lymphoma, arrived in the oncology clinic expecting the attending oncologist to sign a form stating that he could not work and therefore qualified for disability payments. So far as the attending knew, there was no reason Ron couldn’t hold a job.
Ron’s experience of disease was very different from Mimi’s, a phenomenon familiar to cancer physicians. Despite a dire prognosis, Mimi was full of gratitude. Ron, by contrast, though cured of his disease and apparently completely healthy, looked at his life with resentment, even anger. He felt deeply wronged by his bout with cancer and operated with a sense that others should do what they could to help make it up to him.
Mimi was dying but content with her life. Ron was healthy but filled with bitterness. Both patients had the same diagnosis – cancer – but the two human beings differed dramatically, and so too did their illness experiences. Mimi felt blessed by 60 years of a good marriage, while Ron saw in his cancer just one more example of how unfair life had been to him.
“Death be not proud, though some have called thee Mighty and dreadful, for thou art not so…”
– John Donne
The real meaning of health
When the members of the cancer team agreed that Mimi was the healthiest person in the room, they were thinking of health in terms of wholeness or integrity. In fact, the word health shares the same source as the word whole, implying completeness or fullness. Ron felt repeatedly slighted, but Mimi looked at life from a perspective of abundance.
A full life is not necessarily marked by material wealth, power over others, or fame. Many people who live richly do so modestly and quietly, never amassing fortunes, commanding legions, or seeing their picture in the newspaper. What enriches their lives is not success in the conventional sense but the knowledge that they have done their best to remain focused on what really matters.
Mimi easily called to mind many moments when she and those she cared about shared their company and their love. Any sense of regret or sorrow over what might have been quickly gave way to a sense of gratitude for what really was, still is, and will be. Her outlook on life was shaped by a deep conviction that it had a meaning that would transcend her own death.
When someone has built up a life ledger full of meaningful experiences, the prospect of serious illness and death often do not seem so threatening. For Mimi, who had lived most of her days with a keen awareness that they would not go on forever, death’s meaning had been transformed from “Life is pointless” to “Make every day count.”
Mimi regarded the prospect of dying as a lens through which to view the meaning of life. She saw her illness as another adventure through which she and Jim would pass. Death would separate them, but it would also draw them closer together, enabling them to see more clearly than ever how much their love meant to them.
From Mimi’s point of view, death is not a contaminant, fatally introduced to life at its final stage. Instead death is a fire that burns away all that is not essential, purifying a person’s vision of what is most real and most worth caring about. Though not happy to be ill, Mimi was in a profound sense grateful for death. Her sentiments echo those of the poet John Donne:
“One short sleep past and we wake eternally:
And death shall be no more; death, thou shalt die.”
Politicians and policymakers are discussing what parts of the Affordable Care Act to change and what to keep. While most of us have little control over those discussions, there is one health care topic that we can control: what we talk about with our doctor.
The Institute of Medicine (IOM) released the landmark publication Crossing the Quality Chasm 15 years ago. The report proposed six aims for improvement in the U.S. health system, identifying that health care should be patient-centered, safe, effective, timely, efficient and equitable.
The idea that health care should be patient-centered sounds obvious, but what does that mean? The IOM defines it as care that is “respectful of and responsive to individual patient preferences, needs, and values” and that ensures “patient values guide all clinical decisions.”
For this to truly happen, doctors’ appointments need to cover more topics than how one is feeling and what can be done. Does your doctor know your values?
If you answered no, you’re not alone. Fewer than half of people report that their physician or other health care provider asks about their goals and concerns for their health and health care.
Your doctor can discuss medical tests and treatments without knowing your life goals, but sharing your values and needs with your doctor makes discussions and decisions more personalized – and may lead to better health.
How does patient-centered care happen?
In order for your health care to center around you, your doctor needs to know your values, preferences and needs. Everyone is different. Your values and needs may also vary from one appointment to the next.
As a neurologist, when I’m working with a 76-year-old widow whose main goal is to remain independent in her home, we frame her care in that context. We weigh benefits of medications versus the complexity of adding one more drug to her crowded pill box. We discuss how a walker helps her be more independent rather than less, as she can move around her home more safely.
When a stressed college student comes to my office for a bothersome tremor, his preference is to avoid medications that he might forget to take or that might harm his school performance. This guides our discussion of the pros and cons of different options, including using medications but also doing nothing, an option that almost half of patients feel strongly should always be discussed. A year from now after graduation, we’ll revisit the conversation, as his goals and needs may be different.
In sharing their values and goals with me, these individuals enabled a health care approach that respected their needs and also responded to their life circumstances.
Shared decision-making is not just relevant when deciding whether or not to start a treatment, but also when deciding whether to undergo screening (e.g., mammography) or get testing to tease out a diagnosis. The key element of shared decision-making is incorporating your values and preferences alongside the best available evidence.
To do this, your physician should explain the medical information associated with each of the different options – the research, the anticipated benefits and how likely they are, the risks and how often complications or side effects happen, the costs, etc.
Your physician should also discuss your values and preferences as they relate to these options. For example, when partnering with a person with chronic daily headache and a high-stress job, I’ll help him or her reflect on the potential benefits of fewer headaches on work productivity but also the potential impact of the side effect of morning grogginess.
With so many options and so much uncertainty in medicine, individualized care is critical. That happens most effectively if you and your doctor are on the same page about your goals and needs.
Tools for navigating shared decision-making
There are three-step and five-step outlines for shared decision-making, which are primarily aimed at helping physicians be intentional about this process.
These models frame the steps of medical discussions slightly differently, but both emphasize that patients and health care professionals need to be engaged – it’s a partnership. Alternatives are compared, values discussed and a decision made. Reassessment is also an important part of shared decision-making, as alternatives and values can change over time.
For common decisions, different health care organizations have created decision aids to help physicians and patients talk through the scientific evidence, pros and cons, and values that are likely to impact the specific decisions to be made.
Decision aids are not designed for patients to make decisions on their own. They are created to enhance your partnership with your doctor, providing a structured way for you to talk through a decision by reviewing the evidence and your preferences.
What you can do
While busy lives can hinder introspection, it is helpful for you to know your own goals and needs. Are you focused on working two more years until retirement? Do you want to explore physical therapy or diet changes before considering medications? Are you walking your daughter down the wedding aisle in two months and want something to hide the tremor that never really bothered you before?
If you know your values and your goals for the coming months or years, it’s easier to share them with your doctor.
Shared decision-making also requires you to be an active participant. Listen to the options, the pros and cons. Ask questions. Think through how each option relates to your personal values and preferences. Take time if you need it. And then with your doctor, decide what’s best for you.
I’ve had so much support from friends and family through 35 years of family caregiving. But every now and then people say things that really frustrate and annoy me. So I reached out to other family caregivers and asked if there were things they also wish people would never say to them. People surely don’t intend to be offensive: They just might not understand caregivers’ perspectives or haven’t thought carefully about what they’re saying.
If you know someone who is a family caregiver, please try to avoid saying these things that are truly not helpful and may be hurtful.
1. “You should…” This comment just makes us feel judged and defensive. When it comes from people who aren’t intimately involved in our caregiving journeys and often have no idea of the actual needs of our loved ones, it makes us feel resentful. It’s particularly frustrating when people assume we don’t know something obvious, or haven’t already tried what they’re suggesting.
Instead: Consider saying, “You’re doing a tremendous job! If you have challenges that you’re trying to solve I’d be happy to help you brainstorm and research new approaches if that would be helpful. I don’t want to suggest things you’ve already been doing or have ruled out.”
I’m going to say something politically incorrect here: Sometimes our elderly parents make us a little nuts. (And sometimes they out-and-out drive us crazy.) We love you, Mom and Dad, but we’ve heard the story about Aunt Cissy pouring wine in the dog’s bowl so many times we can tell it ourselves — in our sleep.
The repetitions, the forgetfulness, the incessant asking whether we’d like a sandwich: Eventually it just happens, and out of our well-meaning mouths tumble snarky comments and insults that we really don’t mean but they … just … slip … out.
“Seniors often know that their memory and cognitive and physical abilities are declining, and reminders are only hurtful,” says Francine Lederer, a psychotherapist in Los Angeles who works with “sandwich generation” patients and their parents. But even when we manage to hold our tongue, frustration lingers. That’s when we have to be doubly mindful, because by repressing those emotions, we’re more likely to have an emotional outburst.
“You might be justifiably annoyed,” Lederer says, “but take a step back and consider how your parent must feel as she faces her diminished capacities.” When people first start “slipping,” they are aware of the loss, and they are often terrified, scared and saddened.
Since forewarned is forearmed, here are eight common things we often catch ourselves saying plus suggestions for less hurtful ways to say them. Keep reading for the 8 items
I live with a significant hearing loss. I am grateful that with the help of hearing aids I am able to enjoy the sounds of the mountain and forest and hear the people around me. I read this article with interest. ~Fr. Dan
I was intrigued by this part of the longer post:
Hearing loss is being recognized as a national health issue
In June, a series of recommendations on hearing loss announced by the National Academies of Sciences, Engineering, and Medicine seemed to be proof that hearing is loss is finally getting its due as a national health issue.
If followed, these 12 recommendations — combined with those made the previous autumn by a presidential commission on science and technology — could result in a revolution in hearing health care. They would provide changes that would open the market to a wider range of hearing technology and devices, making it easier for consumers to “find and fully use the appropriate, affordable, and high-quality services, technologies, and support they need.”
St. Hugh’s Precious Elder Ministry seeks to bring hope and healing to the elderly—and our neighbors in the Mountain Communities (and beyond)—with dignity and respect; we will offer compassionate care and encourage a sense of belonging and connection to God and the People of God through Intercessory Prayer, Holy Eucharist, Anointing and Reconciliation.