Palliative Matters: Episode 4

What Does Hope Really Mean to the Seriously Ill?

Hope is a complicated subject, with varied meanings and beliefs and interpretations. Nowhere is that clearer than for patients who are confronting serious, advanced or incurable—and for the palliative care clinicians who are tasked with supporting them through these difficult circumstances.

Dr. John Mulder, an experienced hospice and palliative physician, medical educator and director of the Trillium Institute, has given this complex topic a lot of consideration. Hope is a good thing, and can be a major driving force in one’s life.

“I want to shine a light on the meaning of hope,” he says. “What’s the difference between hope and expectation, between hope and optimism, between hope and positive thinking, and all the other ways people use the word?”

But Dr. Mulder is not a fan of “false hope”—untethered to the physical realities of the situation, pretending that the outcome for the patient will be different than what the best medical evidence suggests. Especially if that hope is for something that physiologically is highly unlikely, which can lead to discouragement and stand in the way of making decisions about what is most important and what might still be possible in the time that might remain.

“I just call that lying,” Dr. Mulder says. Contrast that with a hope built on reconciliation with reality, reflecting what is most sacred to a person at this time of life.

In a Palliative Matters podcast, “Defining Hope, Dr. Mulder explored these nuances in conversation with palliative medicine colleague Dr. Jason Beckrow, and further elaborated on them in an interview.

“How can we offer someone the opportunity for hope when all feels hopeless?” Dr. Mulder said. For some, their hope is more of a wish or a dream. Others treat it as an expectation. A farmer plants a crop in the spring with the expectation of a harvest in the fall, based on experience with the crop, agricultural science and climate, he said. “The farmer may hope for rain tomorrow, but expects a harvest in the fall.”

Dr. Beckrow added that a dire prognosis for the patient’s condition, based on medical evidence accumulated from a multitude of other patients presenting the same condition, may cause patients to lose their hope.

“I am meeting them on perhaps the worst day of their lives. How they can find hope in that situation just fascinates me,” Dr. Beckrow said. The doctor’s responsibility is to help people clarify their values and define their goals, relative to what they might realistically expect at this time in their lives. “How we define what it is we’re hoping for can help us find something positive in the midst of difficult circumstances.”

How Do You Want to Live?

“Even in the most desperate circumstances we can find ways to help people find their joyfulness,” added Dr. Mulder. “Our job is to help you figure out how you want to live between now and then. What is important to you? What is sacred to you, and of greatest value to you? What are the things you look forward to, the things you hope for, the life that you want to lead?” he said. “How are we going to make your life worthwhile? That can open the door to all sorts of conversations.”

Take, for example, a recent patient dying from severe lung disease caused by the Coronavirus. Her husband of 62 years was determined to bring her home from the hospital. “His heart was breaking. But he knew he had a job to do—bring her home—and he honored it. The fact that we were able to help him honor that wish before she died gives me a great deal of hope for myself,” Dr. Mulder said.

Or another patient who, when Dr. Mulder asked her what was most important to her, replied that Thanksgiving was her most important time of the year. With the palliative care team’s help, the family planned a Thanksgiving dinner for her and all of her loved ones, holding it around Memorial Day so she could still enjoy it.

“The question is: If my life is limited, what can I do to make the most of it? The patient may be here today, gone tomorrow. But the memories created at this time can leave a lasting legacy, with stories remembered for generations to come.”

How does a patient find a version of hope that will help them in the time they have left? “It centers around the truth and the values they have,” Dr Mulder said. “Part of the challenge is how to be real with people, honest about the reality they are facing, even if it is not what they wanted to happen. Focusing on those things allows the clinician to effectively craft a plan that will respect the values of the patient and acknowledge the reality of the disease.”

When life is short, what’s important to people begins to focus more on relationships than on actions, a desire to see old friends or family for the last time, or visit a favorite restaurant or scenic drive, to reconcile relationships that have gotten estranged, to make arrangements for family members. Sometimes, it’s just living long enough to see your child’s wedding.

What is a Miracle?

People in these situations often hope for an outcome that has no realistic expectation of occurring, Dr. Mulder said. “’I could hope for a miracle, even if the doctors have said it’s incurable.’” Doctors sometimes contribute to this confusion when they offer treatments they know aren’t going to achieve a cure, even when the patient clings to these like a life-preserver.

When patients tell Dr. Mulder they are looking for a miracle, he replies, “‘Tell me what that means and looks like for you?’ I’ll tell them that I believe in miracles, too. But I’ll also tell them that I don’t see this happen very often in my work. I don’t know that we as mortal beings have the capacity to change God’s mind and alter the laws of nature regarding how this disease will run its course,’” he explained.

“’Now could God choose to intervene? First of all, I know He doesn’t need my help to do so. He doesn’t need anybody’s help. He will intervene if he chooses to do so, and if he chooses to do so, I will be at the front of the line cheering and thanking him for that miracle,” Dr. Mulder said.

“But I think we need to understand what the natural course of this disease is, what the laws of nature are going to be. How do we honor the fact that God exists and he cares for you and loves you even if He chooses not to perform a miracle at this time and take the disease from your body?’”