Palliative Matters: Episode 6
What is Palliative Care?
A doctor shows up in a patient’s hospital room and says, “Hi. I’m the palliative physician. Your doctor asked me to stop by to see if I can help you with troubling symptoms of your illness.”
Some people are familiar with the term palliative care. They may even know that palliative medicine is a fully board-certified medical specialty with a focus on relieving the symptoms of illness, clarifying the patient’s goals of care and understanding of medical treatment for their illness, and helping patients to live as fully as possible in whatever time remains to them in concordance with their goals and wishes.
They may know that palliative care does not require a terminal diagnosis, in contrast to hospice care, although they share many of the same techniques and approaches to relieving pain and suffering. And most of the patients referred for palliative care are at least seriously ill, with multiple troubling symptoms or other complications.
But more often the patient’s first comments are: “’Who are you, again? And why are you here? Why isn’t my own doctor taking care of this?’” reports John Mulder, MD, medical director of the Grand Rapids-based palliative education and training center the Trillium Institute. He co-hosts, along with Jason Beckrow, DO, of Caring Circle-Spectrum Health Lakeland, the Palliative Matters Podcast.
In Episode 6 of the podcast, Drs. Mulder and Beckrow explore this nuanced question of what is palliative care—and more importantly, why should seriously ill patients be eager to avail themselves of it. One of the cornerstones of palliative care is empowering people to be able to make choices in their lives, Dr. Beckrow says. “Our goal is to meet patients where they are at, understand their story and help them understand all of their options. I begin by asking what’s important to them. It’s about more than just fight the disease or quit treatment.”
Sometimes the treatment is worse than the disease. Sometimes just being able to hit the pause button on challenging therapies gives the patient an ability to make clearer choices in their lives, he says. “That way, they can experience healing in its fullest sense—however they define that.”
Dr. Mulder tells the story of a young patient he was called to consult on about 15 years ago. This man had lung cancer but found that the chemotherapy prescribed to treat it was absolutely intolerable, with intractable nausea and vomiting. Such that he was refusing further treatment of the cancer, which otherwise might be curable.
The patient told Dr. Mulder that his doctors had done everything they could to manage it, to which he replied: Not exactly. “I put him on a more advanced treatment protocol for nausea and vomiting, and we had him eating his chicken nuggets the next day.” He was also able to resume his cancer therapy—with the palliative treatment for his nausea.
“One of the things we bring to the table is an advanced expertise in symptom management. The sophistication with which we can manage symptoms is underappreciated,” Dr. Mulder says. “I tell patients, ‘One of the ways I can help you is to begin identifying symptoms that are problematic for you and then tackle them, one at a time. I have a really deep bag of tricks for managing troubling symptoms, and I almost never get to the bottom of that bag.’”
In this case, a combination of three different anti-nausea medications in low doses on a continuous intravenous drip, an approach Dr. Mulder had learned at a palliative medicine conference years before and used successfully with other patients who had difficult nausea and vomiting. “It appears that the total effect is greater than the sum of its parts. It can work wonders, as it did for this patient.”
The palliative care concept emerged in North America sometime after the modern hospice approach was imported to this country from England in 1974. The term was coined by Dr. Balfour Mount, a pioneering leader in the field based at the Royal Victoria Hospital in Montreal, Canada.
Doctors specializing in the management of terminal illnesses, with a special focus on relieving the pain of advanced cancer, began meeting at conferences. They started asking among themselves why does the patient need to be imminently dying to take advantage of the skills and protocols they were perfecting. “So we as physicians started seeing patients outside of hospice care and providing our resources and techniques to them as well,” Dr. Mulder says.
Palliative care deals with people who have conditions that medicine can’t fix—or maybe it can, but the treatment leaves a wake of destruction in its path, he says, using the term life-defining illness. Even if it is not terminal, even if it can be managed or cured, the disease’s consequences and its treatments can have huge, life-lasting, life-altering ramifications in many facets of the person’s life.
“We understand the consequences of these diseases and their treatments, and we’re poised to address them, both proactively and retroactively,” Dr. Mulder says. “That’s one of the things palliative medicine can do.”
Then, the palliative professional starts asking questions, trying to get a sense of the patient, the impact of the illness, their expectations, their biggest concerns. “I say, ‘I’m here to help you in all aspects of your journey, to help you overcome some of these challenges, despite this terrible thing that has happened to you. I also want to make sure you’re prepared for what lies ahead. I want to help you move beyond all that so you can live well, live comfortably, live fully, enjoying your life for however long it remains.”