When a patient is seriously or terminally ill, it is common to focus on treatment options and possible interventions to cure the illness or at least prolong life. However, this isn’t always the focus patients want.
In her book Extreme Measures: Finding a Better Path to the End of Life, Jessica Nutik Zitter, MD, wrote, “As patients gained increasing access to high-technology health care a countermovement was being birthed. This movement advocated for a very different kind of right, the right to refuse treatment.” Ensuring that patients have the opportunity to discuss what treatments they don’t want has taken an important role in end-of-life discussions and care planning. Practitioners need to be prepared to discuss options to refuse care and respect patients’ decisions if they make these choices.
“As we embark on the end-of-life journey, we often don’t adequately clarify for people what various futures might look like; and we don’t give them a chance to opt out,” Dr. Zitter told Caring. And once they start on the path of treatment, “It’s like a lobster trap. The further you get in, the harder it is to get out,” she said.
There are many innovative treatment options for diseases such as cancer. However, these interventions can be invasive, require long hospital stays, or have hefty price tags. Even with insurance, patients and their families may end up with overwhelming bills and financial obligations. Coupled with the emotional roller-coaster patients and families endure, people may miss opportunities to spend time together, find peace and spiritual comfort, make positive memories, and have the best possible quality of life.
“We don’t always prepare people for the financial impact of illness. We need to help them weigh the benefits and burdens of various treatment options, as well as the emotional suffering that everyone endures,” said Dr. Zitter. “Right now, under our current health care system, patients and caregivers sometimes are going bankrupt because of serious illness.”
Such situations are only likely to multiply as the population ages. “Chronic critical illness is seeing a rapid rise,” Dr. Zitter said. “We will see a rising epidemic of people being dependent on machinery and expensive treatments to stay alive.”
Part of the problem, Dr. Zitter said, is that “some people have no idea what to expect when they or a loved one gets sick. They don’t understand the potential impact of various treatment options. There is a disparity in knowledge, and that is an injustice.
“Anecdotal experience tells us that physicians and other health care practitioners die better because they choose palliative care and hospice earlier,” Dr. Zitter added. “They make these choices not necessarily because they have more education or money, but because they have the knowledge to weigh options. I think everyone deserves access to the same information I do as a physician about how they want to live and die.”
Without information and knowledge, Dr. Zitter suggested, people may be inclined to think more is better. However, she said, data suggest when people have constructive, honest, end-of-life conversations with physicians, they are more likely to choose less technology and “opt out of the end-of-life conveyor belt that goes from treatment to treatment.”
It doesn’t help that politicians and other public officials often don’t understand palliative and end-of-life care. “Many politicians attack palliative care as throwing people out in the pasture to die. But these misrepresentations of palliative care are really shortsighted and irresponsible,” Dr. Zitter said. “In truth, patients want information so they can make choices. When they have information, they can choose quality over quantity and find peace with these decisions.”
Three Cs
It isn’t always easy for physicians and other practitioners to discuss the often hard realities of death and dying with patients and their families. However, Dr. Zitter suggested “three Cs” to make the discussion easier. The first C is to “Confront death. It is a reality, not a failure. We need to accept this and not always push for further treatment, especially when it is unlikely to have a significant impact,” she said. “The reality is that our patients die sometimes. Stand strong and be confident in the face of death and dying. Don’t be afraid to address it.”
The second C is “communicate.” “We have to be prepared to share truths with our patients and their families. We need to communicate what we think is going to happen, how, and when. Don’t use uncertainty as a shield,” Dr. Zitter said. “No matter how brilliant or experienced you are, you can’t easily pivot from cure to ‘there’s nothing more we can do.’ That is a lot to ask of people; it’s hard to turn the ship around and change course quickly or suddenly.”
The third C is “collaborate.” Dr. Zitter said it’s unreasonable to expect the physician to carry all the burden alone. “When this happens, the practitioner often feels like the patient’s life is in his or her hands and like he or she has let the patient down. We need to be more collaborative to allow us to support each other.” Then the team can put the patient first and share the responsibilities involved in palliative and end-of-life care.
It is important to remember that doing everything you can “doesn’t always mean what you think it means,” Dr. Zitter said. “When you ask patients what they want, the answer may be surprising. They may say they don’t want to be alone, scared, or in pain.” In reality, doing everything possible may not really mean ‘everything’ — it may not mean using a ventilator or feeding tube.
“We need to be much more sensitive to what people want and understand that it may be very different for each person,” said Dr. Zitter. Patients shouldn’t be pressured to make decisions or choices if they are unsure. “You can always come back later when someone is hesitant to be involved in decision-making,” she said. Building trust by offering them a snack or beverage, or simply sitting and talking to them can help patients be more receptive. “In very scary times, it gives them more confidence if they trust you.”
Although every patient is unique, Dr. Zitter said that most patients want autonomy until the end. “They want to live their lives their own way even as their illnesses advance. And we can help them take control and make the best of the time they have left.”
Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations.
Miss Mabel
My patient was an elderly African American woman with a bad heart. She’d been admitted with her fifth episode of fluid on the lungs in eight months, and her breathing had been touch and go for days. Finally, our medicines kicked in, and her sick kidneys began to release liters upon liters of urine, drying out her lungs enough that she was no longer in immediate danger of being intubated. But it was only a matter of time before another flare-up would bring her back to us, and I knew that a conversation about a breathing tube was way overdue.
I entered her room without a lot of time to spare. We were planning to discharge her from the ICU to the hospital floor later that day, and a room was in the process of being cleaned upstairs. The patient acknowledged me nervously and sat up a bit in the bed. Her daughter, usually present at our meetings, wasn’t due in until later, but I was afraid to miss the opportunity to have a goals-of-care discussion, which hadn’t happened so far.
I pulled up a chair and sat next to her. “I’m so glad you’re feeling better,” I said. “This must have been scary.” She nodded cautiously. Then I dove in. I began to talk about breathing machines. She had been intubated on her third admission, so there was a reference point. I explained that her heart failure was accelerating and that we might not be successful in getting her off the ventilator the next time she got intubated.
“Would you want us to put you on a breathing machine if our medicines couldn’t treat your breathing quickly enough?” I asked. Her face closed up. She was leaning as far away from me as she could, back into the pillows. I couldn’t tell if she was angry or perhaps terrified. I asked what she was thinking but got no response. Was there dementia? Was she confused? She simply wouldn’t answer.
At that moment, I felt a gentle tap on my arm and turned around to see one of the social work interns, a young African American woman. She must have been standing behind me for a while. I felt a slight tug of concern. Had I somehow been culturally insensitive?
“Mind if I give it a try?” she asked quietly.
I stood up and gestured to my vacated seat. “Please,” I said. She sat down next to my patient. Picking up her hand, she smiled at the elderly woman. There was no talking for several beats. The woman visibly relaxed, then smiled back.
“Miss Mabel,” the intern said in an admiring voice, “where did you get your hair done? It’s lovely!”
And they began to talk.
It would never have occurred to me to talk to my patient — this one or any other — about her hair. It wouldn’t have occurred to me to call her Miss Mabel. One might argue that the patient’s hesitation to talk to me had nothing to do with race, that she closed up because I was hurried and insensitive. But from then on, I began to notice how Chaplain Betty Clark and Reverend Donald Miller were addressing elderly African American patients, with a quiet calm and respectful deference that felt almost Southern in its cadence. I realized that I needed to slow down and set a different tone — something that has proven challenging for me, with my fast-paced, East Coast urgency. This was not something I’d ever learned in medical school. I realized that I’d likely been inadvertently offending my patients for years. I promised myself I would do everything I could to change my approach.
Excerpt reprinted with permission from: Extreme Measures: Finding a Better Path to the End of Life, by Jessica Nutik Zitter, MD. Avery Publishing, New York, New York. 2017.
