On The Cover
Sonya Collins
During residency at the University of Washington in Seattle, Traci White, PharmD, spent a lot of time on rotations in the ICU as part of the team providing intensive care to critically ill patients. What struck her about this work, she said, was “You’re looking at paper, numbers, data, and graphs. You’re talking a lot about the patient—you’re discussing everything about that patient. But you have no idea who that patient really is.”
That’s what was missing for White—the patient connection. That’s ultimately what led her to end-of-life care.
“I really wanted to make connections with patients, and I gravitated toward symptom management,” she said. “I wanted to find any way I could to make their life better while going through these horrible things, like cancer.”
Pharmacists are critical members of the end-of-life care team. Their key focus is to alleviate pain and other discomfort at the end of life. That can mean adding medications, recommending different formulations or routes of administration, and deprescribing medications that are no longer needed. End-of-life pharmacists counsel and educate patients and their families on all these changes—sometimes right at the bedside.
While the Board of Pharmacy Specialties does not certify pharmacists in end-of-life or palliative care, pharmacists who practice in this field get the necessary skills in pharmacy school, in hospital residencies, and through training from supporting organizations such as the Society for Pain and Palliative Care Pharmacists. According to the Board of Pharmacy Specialties, demand for pain management experts in hospice and palliative care is on the rise.
Direct impact on patient quality of life
End-of-life care begins when a patient decides they no longer want to pursue treatment to fight their terminal health condition. The treatment no longer benefits the patient, and it may cause adverse effects that diminish the patient’s remaining quality of life.
At the end of life, pharmacists help make patients as comfortable as possible so that they don’t spend their remaining time suffering and may even feel well enough to enjoy the time they have left. Achieving those goals can mean managing medications for pain, nausea, shortness of breath, depression, anxiety, and other symptoms.
“Not everybody is in that phase at the end of life where they are sleeping all the time,” said Jessica Geiger, PharmD, BCPS, who is a clinical pharmacist on the palliative care team at OhioHealth Riverside Methodist Hospital in Columbus. “Some people are still up, active, moving around and doing things, but they’re struggling with depression, anxiety, or insomnia.”
The drugs used to manage these types of symptoms, unlike some of those used to treat diseases, have a direct and typically swift impact on the patient’s quality of life. Many pharmacists who specialize in end-of-life care say this is the most gratifying part of their work.
“You treat a symptom and make them feel better,” said Marliese Gibson, PharmD, BCPP, pharmacy coordinator at OhioHealth’s Kobacker House, an in-patient hospice care center. “You treat hypertension or cholesterol—those treatments are very important—but people don’t necessarily feel better just because their blood pressure is a bit lower.”
Pharmacists on patient-centered teams
To help determine just the right medications and dosage to provide patients with optimum quality of life during their final days or months, pharmacists may consult with the hospice nurse for in-home hospice or work directly with patients at their bedside.
Alifia Waliji-Banglawala, PharmD, directory of pharmacy services at Care Dimensions, a home hospice service in Danvers, MA, often consults with nurses who call her from patient bedsides.
“They may ask a question about
morphine or how to administer Keppra for a patient who has trouble swallowing,” Waliji-Banglawala said. “When you give that answer, you know there will be immediate benefit.”
These direct calls from the nurse at the bedside emphasize that pharmacists are a critical part of the team in end-of-life care, Waliji-Banglawala said.
“Hospice is all about the interdisciplinary team,” Gibson added. “I don’t see patients at their bedside for an extended period of time, but I collaborate with all the people who are at the bedside—physicians, nurses, social workers, patient aides—and get their take. We are a sounding board for each other, and I love being part of that team.”
But oftentimes, it is the pharmacist who is at the bedside. Pharmacists work directly with the patients to understand their symptoms and care goals as well as to educate them on the medication changes they may
recommend.
Dispelling myths about pain meds
Though pain may be a major issue in the final days of a person’s life, many patients have preconceived notions about pain medications that make them resistant to seeking pain relief.
It’s common for patients to worry, even when they have very little time left, that they will become addicted to opioid painkillers if they accept them.
“‘But I don’t want to get addicted to opioids.’ I get that statement so many times, and it breaks my heart,” Geiger said.
Geiger explains to patients that, in this context, strong painkillers are medically necessary and an addiction is unlikely.
If patients themselves don’t have this concern, they fear that their children will disapprove of their taking an opioid.
Deprescribing chronic medications
Often more difficult than convincing a patient of the benefits of pain medication is convincing them of the benefits of stopping certain medications they’ve taken for decades. It can be hard for patients to let go of these medications or admit they are no longer needed.
“They’ve made one hard decision—either enrolling in hospice or choosing, for example, to stop chemotherapy—and then we ask them to make another hard decision,” Geiger said.
But deprescribing can be a key factor in improving the patient’s quality of life, by reducing the adverse effects of now-unnecessary drugs and also by reducing the pill burden.
Patients often say, “But my doctor told me I needed to take that for the rest of my life,” or “That’s what’s keeping me alive” about blood pressure, cholesterol, and other chronic medications.
To these concerns, White said, “That was important and made sense for you for all these years, and you did a great job with that, but now, in this moment, that medication is less important.” When patients comment that it can take them a half-hour to swallow all their pills, she stresses that they don’t have to do that anymore if they don’t want to.
Inhalers are one chronic medication that is often difficult for patients to let go. Patients who enter hospice with lung cancer, COPD, or end-stage heart failure may not be getting enough oxygen, but inhalers are no longer the solution. “These long-acting inhalers that 30-, 40-, 50-, or even 60-year-olds can use, older adult patients don’t have the lung capacity to inhale that deeply into their lungs. The medication is ending up at the back of their throat,” Waliji-Banglawala said.
When patients agree to switch to a nebulizer, she said, “We significantly impact their quality of life.” But it’s not easy to make the case for patients who believe an inhaler is keeping them alive.
Waliji-Bangawala received a call from a hospice nurse who couldn’t convince a patient, who was clearly struggling with his inhaler, to try a nebulizer. The pharmacist decided to visit the patient in his home herself.
Belligerent at first, the patient told Waliji-Bangawala that he didn’t want to hear what she had to say. He just wanted his inhaler. The pharmacist asked if she could watch while he used his inhaler. He struggled to draw the medication.
“You could see him strain every muscle in his torso just to take those two puffs,” she recalled.
Waliji-Bangawala demonstrated proper use of a nebulizer. She left it with the patient and asked him to call her the next day and to let her know how he felt. Still angry, he told her he would try it once but that it wasn’t going to work. The next day he called and, begrudgingly, told her that the nebulizer worked better than the inhaler.
A few months later, Waliji-Bangawala got an unexpected call from the patient, who had once told her he didn’t want to hear what she had to say. “He said, ‘I’m calling because I trust your opinion: Which flu shot should I get?’ ”
The family connection
At the end of life, caring for the patient means caring for the family, too. Pharmacists can address many of their needs. For starters, many family members are exhausted from being caregivers themselves. They may give up jobs and other responsibilities to take care of their loved one. Better symptom management by clinicians can ease a lot of the burden on families.
“It’s heartwarming to know that we help with symptoms at the end of life so that family caregivers can go back to functioning as family members rather than as a nurse. It’s very fulfilling,” Waliji-Bangawala said.
Family members of patients on in-home hospice may have to administer complex medications. Particularly in the time of COVID-19, when family members cannot visit patients in the hospital, they may go to greater lengths to bring their relatives home, where they will care for them. That can require a lot of education.
“We try to have the vast majority of our patients on oral medications when they go home,” Gibson said. “But some of them are on concentrated liquids, where mistaking 0.25 mL for 2.5 mL can be a significant dosing difference, so we have to make sure they are educated on this.”
Family caregivers might also need education on administering I.V. or S.C. medications. Pharmacists counsel them on symptoms to look for that would prompt them to administer the medication and adverse effects they should watch out for, too.
Family members can also become very anxious when prescribers add new meds or take old ones away.
They may harbor many of the fears and misconceptions about opioid painkillers that patients themselves do. Pharmacists spend a great deal of time counseling family caregivers on all these issues.
This year, end-of-life pharmacists have also devoted time and attention to making sure patients and their families have received COVID-19 vaccines so that they can safely spend the patient’s remaining time together as the patient wishes.
Key players on the end-of-life care team
A pharmacist’s expertise is a pivotal part of end-of-life care, but their inclusion on every end-of-life team is not a given.
For starters, while Medicare requires that patients receive a comprehensive medication review when they enter hospice and routinely thereafter, the federal agency doesn’t require that it’s a pharmacist who does that job.
“Most pharmacists in this field feel very strongly that Medicare should consider us integral parts of the hospice interdisciplinary team,” Geiger said. “Who better to review someone’s medications than the people who are trained for years in college about nothing but medications?”
While state-recognized provider status helps move the needle in the right direction, it doesn’t resolve the problem.
In New Mexico, where pharmacists are recognized as pharmacist clinicians, White says the distinction raises their profile among patients and their families. “It makes people more open to us as health care providers, either as a physician extender or just an added layer of support on the team.”
But it was years after New Mexico’s pharmacist clinician title came to be that H.B. 42, passed last year, allowed for pharmacists to be reimbursed by state commercial insurers. Still, without federal recognition, Medicare, the payer that covers a significantly large proportion of patients at the end of life, will not reimburse pharmacists for clinical services.
In Ohio, where Geiger and Gibson practice, the bill that made pharmacists providers was signed into law in 2019, but it has taken time for health systems to update their practices to reflect that. Those changes are in the works right now. Change will never happen, Geiger said, without physician buy-in.
“Pharmacists can shout it from the rooftops that we are great and should be allowed to do these things, but it’s not until other disciplines say, ‘Our pharmacists are great and they should do these things’ that change really starts to happen.” In the meantime, she said, “Continue to demonstrate your worth.”