By Jeanie Davis, Author
For patients with serious illness, mortality can range from weeks and months to years. Patients with dementia and metastatic cancer may live with their illness for many years.
Palliative care often is essential in the care of patients with serious illness, says Allison Silvers, MBA, vice president of The Center to Advance Palliative Care (CAPC), part of the Icahn School of Medicine at Mount Sinai in New York City.
The big questions: How can healthcare systems improve the lives of people living with serious illness? How can they help doctors and other caregivers learn the skills they need to give patients better quality of life in the final weeks, months, and years?
After all, a patient is a person — and that person might decide to travel the country for fun and adventures instead of pursuing aggressive treatments, says Silvers.
For many patients, symptoms such as severe pain, fatigue, reduced functional ability, and shortness of breath are debilitating, yet go unaddressed. “Patients may think it’s just part of the illness, that nothing can be done. They don’t think to mention it,” says Silvers.
When pain is the issue, patients may be reluctant to take opioids, fearing addiction. Clinicians may be afraid to prescribe opioids — and they often are unaware of all the pain management options.
“Opioids are an option but there are others as well — it’s just that nobody asks,” says Silvers.
CAPC’s mission is to increase the availability of quality palliative care services for all people living with serious illness. That includes improving the knowledge and skills of all clinicians, case managers, and team members who serve seriously ill patients and their families.
At the heart of this problem is communication, says Silvers. “Patients and families aren’t really getting information they need about what to expect with their illness, about their prognosis. And clinicians aren’t asking about their goals of care … what’s important to the patient.”
It’s all about asking and finding out what’s important to the patient, says Silvers. What do you want to be able to do with your life? “It’s true shared decision-making when you clarify the patient’s goals,” she explains. “That’s when you learn what’s most important to that person. Then, you build the treatment plan around that.”
If aggressive treatment is the decision, that is fine, Silvers adds. “But it’s a decision that must be made consciously. Right now, people are not making conscious decisions because in many cases they don’t have full information about their diagnosis, their prognosis, or any trade-offs.”
Patients deserve to receive full information if they want it, says Silvers. “It’s not the case manager’s role to deliver serious news or prognosis; that should be the treating clinician. However, the case manager can act as an intermediary to facilitate these conversations.”
Case managers are ideally positioned to help these patients live their best quality of life, says Silvers.
In coordinating treatment, case managers can ask questions about pain, fatigue, breathing, and other issues. Can patients make their own meals? Do they have trouble walking or getting ready for the day? That kind of feedback can be shared with other team members.
Caregivers should get similar attention, Silvers adds. How are they doing? Feeling stressed? A 2008 NIH study found that family caregivers have a 63% higher risk of early mortality compared to noncaregivers. (The study can be found at: https://bit.ly/2YoWSRA.)
Case managers have many opportunities to start these conversations, says Silvers. “They are talking to patients with serious illness anyway during the course of the day. My mantra is, if you’re talking to them, you might as well have a meaningful conversation.”
How to initiate the difficult conversation? “It is teachable, and it’s really not that difficult,” says Silvers.
She suggests starting with, “Tell me what you know about your illness” or “Is there anything more you want to know?” That simple question can be a springboard to help the patient open up and talk about their goals, values, and wishes.
Silvers shares a story about a man caring for his wife, who suffered from advanced cancer, at home. He never knew she was actively dying. No one ever asked either of them what a good quality of life would be for her — and as a result, no one helped to make that happen.The patient spent her time cycling between hospitals and rehabilitation facilities.
In that situation, a case manager can be very helpful in speaking with the physician. The case manager can help the caregiver get support. The entire treatment team, including social workers, can get involved to improve quality of life for both patient and caregiver.
Standardized assessment tools are available to help case managers understand the patient’s quality of life and symptoms. These help gauge pain level, functional ability, fatigue, and other symptoms. There also are tools to help initiate the important conversations.
Communication skills can be taught, Silvers adds. Certain key phrases help to stimulate conversations include: “Tell me more about what is happening at home. Tell me more about what concerns you. What are some things that make your life meaningful that you really find essential to your happiness?”
Physicians can use the “Ask, Tell, Ask” formula: “Can I explain what I think might be going on from a medical perspective?” and “What did you understand from what I just said?”
“There are not enough of those meaningful conversations going on,” says Silvers. “Certainly, doctors, nurses, and case managers are talking to patients about treatment options. But are they tying patients’ values into that context?”
This key communication isn’t happening often, she explains. “Physicians aren’t taught how to do that. We’re trying to teach case managers to be the intermediaries who elicit those values, who elicit that very critical information from patients.”