By Jeni Miller
Most healthcare providers know that compassionate care and honest conversations with patients can lead to trusting relationships and better outcomes. Those relationships are even more important as a patient edges toward the end of life, or received a diagnosis of chronic or terminal illness.
This is where palliative care comes in. Differentiated from hospice, which focuses solely on end-of-life care, palliative care is “medical and related care provided to a patient with a serious, life-threatening, or terminal illness that is not intended to provide curative treatment but rather to manage symptoms; relieve pain and discomfort; improve quality of life; and meet the emotional, social, and spiritual needs of the patient.”1
This special kind of care begins on a foundation of solid communication with the patient and his or her family. It can take many forms, depending on how those patient-provider conversations play out.
“Having a conversation with the patient is truly the crux of palliative care,” says Gregory Gadbois, MD, MBA, a board-certified family physician and executive medical director at naviHealth. “You have to know what this particular patient’s goals are, prepping the patient for what to expect going forward. If they have an advanced illness, you may discuss what is their life span, what are their symptoms, the expected success of available treatment options. But it’s also important to ask, ‘What is it that you want going forward?’ That’s the thing that we often miss and aren’t good at in healthcare.”
For most healthcare providers, this is an acquired skill that departs from the standard practice of objectively prescribing treatment for the patient. Asking the patient a subjective question like “What is most important to you?” can be an uncomfortable position for the provider. Also, the responses and plan may change over time as the patient’s disease process evolves.
“The important thing to focus on when working through this is remembering that ‘This is what I know the patient is interested in right now,’” Gadbois explains.
Depending on what is most important to the patient, palliative care can be ordered to help with symptom relief, pain control, and lifestyle management. While the needs and plan may look different from patient to patient, anyone can be a candidate for palliative care.
Gadbois tells the story of a recently married, 40-year-old patient whom he referred to palliative care when her diagnosis of stage-four colon cancer did not respond to aggressive therapy and metastasized.
“I talked for an hour on the phone with her and asked what her oncologist had said,” recalls Gadbois. “He’d said that she could try a fourth round of chemo, but that each round of chemo tends to be less and less successful. We talked about the transition between this world and the next, and how to make her as comfortable as possible. A month later, she passed. Since I saw her sister as a patient, too, [her sister came in and said] ‘Thank you for having that talk with her, because she needed that permission to say ‘I’m done.’ She didn’t want to let her husband or family down, and needed someone to say, ‘It’s OK. You’re not giving up.’ She said they had a much more fulfilling time in that last month than they otherwise would have.”
For his part, Gadbois believes this conversation was one of the most “fulfilling things [he’d] done because [he] took the curative hat off and asked, ‘What can we do to make this journey for you go as smoothly as possible?’”
Likewise, Gadbois noted, healthcare providers need to “recognize when to take off the curing hat and acknowledge that advanced illness will continue to progress and be the end for this patient. We should turn our attention to include how to help them prepare for what’s next with as much grace and dignity as possible.”
The ‘Who’s Who’ of Palliative Care
To provide the highest-quality care, all healthcare providers “need to have their ears perked up to identify patients who would benefit from these discussions,” says Gadbois. It is true that some providers — physicians and case managers alike — may never be comfortable engaging in palliative care discussions, but there always is the opportunity to refer a patient to someone who is.
“A case manager should be always looking and asking, ‘Would palliative care be helpful in this instance?’” explains Gadbois. “If they aren’t comfortable taking it further than that, they can always get a patient scheduled with someone who can broach the subject.”
Sometimes, that may be a clinician in the patient’s skilled nursing facility. Gadbois says case managers can learn about the situation by requesting the care team to ask themselves, “Would I be surprised if this patient passed away in next year?” If the answer is no, then this person likely is a candidate for palliative care conversations.
There also are times when the patient is not ready and needs buy-in, he added. But they will never have a chance if their care providers do not bring it up.
“It’s worthwhile to have conversations about [the possibility of palliative care] with whomever will be caring for the patient,” shares Gadbois. “We have the freedom to open our eyes and plant the seed.”
Who better to plant the seed than a case manager, who already is well-versed in attentiveness to many facets of patient care?
“Palliative care is an integrative process that needs continued discussion,” explains Gadbois. “Seeking referrals to find someone in the community setting can help make it part of the patient’s discharge plan. Case managers also can talk to the patient’s primary care physician’s office and say, ‘This person may be appropriate for [palliative care].’”
By following up on this, Gadbois believes case managers can be “the linchpin in making sure it doesn’t fall through the cracks. Transitions of care can often lead to falling through the cracks. [Case managers] are a key player in making sure gaps are filled and someone else has grabbed the baton.”
While the key to the palliative care experience is to hold meaningful discussions about what the patient wants to do, there might be times when those conversations fall flat. “The worst time to have this conversation is when the patient is having acute distress in the ED,” he says.
Otherwise, the sooner a provider can hold the conversation with the patient, the better. The care team will be more prepared in knowing what the patient does and does not want. This is where a palliative care plan can lead to a reduction in hospital readmissions and other outcomes.
“If a patient has COPD, and they’re 75 or 80, and they’ve been intubated before … if they go on a vent again, they may not come off of it,” Gadbois says. “As part of their palliative care plan, they may say that they don’t want that. If there’s a flare-up, they can be prepared to do something at home to get through it, especially if they don’t want to go to the hospital. If everyone is clear with that, then the palliative care physician will put together a game plan to handle that next flare-up.”
A situation like that may not be quite so rare. According to Gadbois, 80% of people do not want heroic measures performed at the end of their lives. For those with advanced disease, “It’s like living life walking through a fog. The farther away something is, the fuzzier it is, but you gain more clarity as you get closer. As you move along in this journey, the clearer the outcome and expectations.”
As diseases progress, healthcare providers can hold those conversations knowing a time may come when a patient will approach a situation where interventions are not just low value, but no value, says Gadbois. Helping them avoid unwanted measures and stay out of the hospital is a valid part of a palliative care plan.
It is all about peace of mind and the intangible benefits of having a strong palliative care plan when it matters most. “Decreased hospital readmissions are good, but with patients and their family members, it’s about certainty,” Gadbois notes. “Some patients’ families are filled with regret because they didn’t know what their loved ones wanted, and emotions are always heightened in these situations. For both the patient and the family, [palliative care] can help them move through their journey more easily, and it becomes easier to make decisions.”
Case managers can help their hospitalized patients by mustering the courage to broach the subject of palliative care measures. According to Gadbois, hospital case managers should not fear these discussions because most people appreciate it after the fact.
Many large health systems offer resources and specialists to help case managers in this area. Other resources, like training programs, offer in-person classes and online training modules that can help case managers build confidence in holding these discussions with patients and making appropriate plans.
But most important is remembering palliative care is a worthwhile way to care for patients in their most vulnerable state, while also acting as a balm for the healthcare provider who is trained primarily to cure.
“In the healthcare field, we are trained as physicians to cure — we see disease as enemy, death as failure,” shares Gadbois. “But the reality is, 100% of our patients are going to die. If we look at death as a failure on our part, we may need to look at another field. Meanwhile, the patient doesn’t want to let their doctor down, or their family. This is why we need to simply ask, ‘What’s important to you?’ To say to them, ‘What matters is what you want.’ They need to have those options, and palliative care provides that.”
- Merriam-Webster. Definition of palliative care. https://www.merriam-webster.com/medical/palliative%20care