‘Let’s Talk’: How to Help Families Have Difficult Conversations
At a time when modern medicine is allowing people to enjoy longer, fuller lives, mortality is not always a chief concern. But when a serious illness occurs, the topic becomes unavoidable.
This became especially clear during the early days of the COVID-19 pandemic when hospitals were overrun with patients, many with grim prognoses. “The pandemic gave all of us a sense that life can be short and there’s the very real possibility of dying,” says Jennifer Kapo, MD, director of the Palliative Care Program at Yale New Haven Hospital. “It opened the door for us to talk more about death and have a better sense of our mortality.”
Palliative care is a caregiving approach for anyone with a serious or chronic medical condition; its goal is to maximize quality of life and manage symptoms. In addition to helping patients and their families navigate difficult conversations and decisions, palliative care team members are attentive to “goals of care,” which means understanding the patient’s wishes and how medical steps can help achieve them.
For example, if a patient has a low likelihood of coming off a ventilator, that would be made clear to them, if possible, before they were put on one, explains Laura Morrison, MD, a physician in the Palliative Care Program.
“The pandemic highlighted the need for us to have more proactive and earlier conversations with patients and their families. If we gave them the chance to make a choice, some might say they don’t want to die in an intensive care unit,” Dr. Kapo adds.
Still, many people still aren’t sure what palliative care really means. Below, we talk with a few members of Yale Medicine’s program to better understand it.
How does palliative care differ from hospice care?
Palliative care is a specialized model of care for people living with serious or chronic illnesses including cancer, heart and liver failure, dementia, and pulmonary disease.
Like hospice care, the focus is on maximizing comfort and quality of life. But palliative and hospice care differ in that hospice is for patients who are not receiving life-extending treatment, and is typically limited to the last six months—or less—of one’s life. Palliative care, conversely, can be integrated into a patient’s medical care at any point during their illness, from diagnosis to end-of-life, and can include life-extending medical treatment.
“Essentially, palliative care is an extra layer of support for any patient who has a serious illness. That can include attention to pain and other symptom management, as well as help coping with the stress of having the illness,” Dr. Morrison explains. “We also focus on facilitating communication between patients, their families, and medical providers.”
The Palliative Care Program has 35 members in various disciplines, including physicians, nurses, social workers, a chaplain, a psychologist, and a pharmacist. Palliative care services are offered to all patients at Yale New Haven Hospital and Smilow Cancer Hospital, and at Smilow’s outpatient offices. And it provides care on a spectrum, based on what patients and their loved ones need in the moment.
“At the beginning of a serious illness, a patient’s needs might revolve around addressing anxiety over their diagnosis,” Dr. Kapo says.
Plus, taking care of the entire family, and not just the patient, is an important element, Dr. Kapo adds. “Our goal is to provide the best quality of life possible to patients and their families, which is why our bereavement program is also an important element. Our care does not stop when a loved one dies,” she says.
How is palliative care broached with patients?
Because Yale Medicine offers palliative care to hospitalized patients, that is often where someone first hears about the model of care.
“We typically structure the conversation broadly at first and ask a patient what they understand about their illness, what they have heard about it, and what they believe about it,” Dr. Kapo says. “If a patient has no idea that death is a real possibility, we spend a lot of time sharing information. Or, if they have been sick for five years and know that time may be short, we talk about what is important to them and what they want to do with the time they have left.”
That, Dr. Kapo says, opens a conversation about a patient’s values. “We listen very carefully and get a sense of whether this is a patient with goals of wanting to extend life no matter what it takes, or someone who is more interested in quality of life,” she says.
The goal of palliative care is not to change a patient’s mind about their decisions, she adds. “It’s to listen to a patient’s story and support their decisions,” Dr. Kapo says. “If someone tells me that they will fight for every last second of life, no matter what the cost might be physically, then we honor that.”
Meanwhile, a social worker can provide support and address any psychosocial issues. For example, if someone is just diagnosed with a critical illness, their primary concern might be how they can still work and pay their bills. The team’s social worker can help them navigate the logistics of their health insurance coverage and sick time policies, among other issues.
With other patients, the social worker might help explain a diagnosis to a patient’s children in an age-appropriate way.
The program also has a medical-legal partnership that assists patients with estate planning; navigating entitlements, including Social Security and insurance; and advance directives (a living will), a written statement of a patient’s wishes regarding medical treatment in the event they are unable to communicate them to a doctor.
What are the benefits of palliative care?
Palliative care is by no means a new medical concept. In fact, it was all medical providers had before many current treatments were invented.
“Back in the early 20th century, before antibiotics and chemotherapy and many other therapies we now have, physicians provided palliative care as their treatment,” Dr. Morrison says. “Our job was to be present, hold hands with patients, and relieve symptoms as it was possible. Morphine might have been given for pain.”
Today, palliative care encompasses not only all the advanced medical treatments and medications now available, but it is increasingly being woven into care for chronic conditions.
Meanwhile, research has shown that palliative care is effective. One study published in The New England Journal of Medicine in 2010 examined patients newly diagnosed with metastatic non-small cell lung cancer. One group received standard oncologic care; the other had standard oncologic care with palliative care added on.
Those in the palliative care group reported less anxiety and depression and were also hospitalized less. They also lived a month longer. Subsequent similar studies expanding to other populations with advanced serious illness have also shown positive outcomes.
