6 days ago
Hospitalists Should Champion Hospice as ‘Life With Dignity'
If anyone can put a positive spin on the end of life, it's Charles Vialotti, MD, director of Hospice Care at Holy Name Medical Center's Villa Marie Claire in Bergen County, New Jersey. Violotti, who at the age of 80 lives at the 20-bed Villa Marie Claire to serve its residents full-time, says the hospice industry needs hospitalists' help with sort of a rebrand, one that will almost certainly have a positive effect on patient and family satisfaction.
'Providers used to stress offering people death with dignity. And if you think about that, who is ever going to choose anything that offers death? Death in any form is still death,' Vialotti said. 'So, we really like to focus on offering people life with dignity, giving people back choice, giving them the option to structure their final days, weeks, or months the way they would most like to see it happen.'
Charles Vialotti, MD
Vialotti said that when patients come to his facility, they receive state-of-the-art care, plus the opportunity to spend time surrounded by loved ones, family, and friends in an environment that is comforting, calming, and soothing. Plus, patients can take advantage of opportunities like learning a new hobby and enjoy social interactions both on their own and with their loved ones.
While hospice facilities like Vialotti's give patients full-time residential care, home hospice programs also give patients the opportunity to spend time in an environment that's comfortable and familiar, surrounded by family and friends — if they know about it, and are made aware that hospice isn't just 'going home to die.'
'I think too often we focus on the negatives, on stopping treatment, stopping interventions, stopping medications that we've become reliant on,' Vialotti said. 'Instead of that, we really have to talk about all the positive aspects of what this option can mean.'
Shoshana Ungerleider, MD
Hospitalists remain a critical member of the hospice education team, even though the vast majority of today's hospitals have at least some sort of palliative care staff to educate patients nearing the end of their journey, said Shoshana Ungerleider, MD, founder of the nonprofit End Well. The hospitalist has worked to build a relationship with the patient, one they can use to demystify hospice, she said.
'Given that hospitalists are that main touchpoint for patients — beyond nursing care, at least — I think if we can encourage the hospital-based clinicians to frame hospice not as giving up but shifting the focus from prolonging life at any cost to really maximizing comfort and quality of life, that will go a long way,' Ungerleider said.
Clearing Up the Confusion
Hospice care first came to the United States from England in the 1970s, and decades later, there's still a lack of knowledge surrounding this form of care among patients and their lay caregivers — and some doctors, too.
'Even as healthcare workers, even as hospice workers, we don't always realize that people don't know what they don't know,' said Julie McFadden, RN, a hospice nurse and online educator better known as 'Hospice Nurse Julie' to her 1.7 million followers on TikTok. 'It's not really built into our healthcare system to educate and talk to families.'
Julie McFadden, RN
'This happens a lot in healthcare: We tend to stick to our lanes,' McFadden, the author of Nothing to Fear: Demystifying Death to Live More Fully , said. 'Like, well, we wouldn't tell the patient that they were dying because they have an oncologist, and the oncologist will tell them, and maybe, maybe the nephrologist knows something. Everyone's kind of stuck, unbeknownst to themselves.'
So, for hospitalists, with their position closest to the patient, now is an important time to do a refresher on hospice, given the aging of the Baby Boomer generation. Ungerleider said that doctors should place an emphasis on the fact that hospice is not the absence of care; it is active care — it's just a shifting of the focus.
'We want hospitalists to be clear on what the hospice team is composed of (and) how they are able to support and not support families,' said Ungerleider, also the host of the Before We Go and TED Health podcasts. 'I think demystifying that process, offering it early as a meaningful option, I think patients are more likely to engage with it earlier and then hopefully benefit from it more fully.'
As Ungerleider noted, early admission to hospice — as quickly as possible after cessation of treatment — is shown in the clinical literature to actually extend the length of patients' lives and enhance families' satisfaction with the way their loved one has spent their final days.
The 2007 study 'Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window,' led by Stephen R. Connor and published in the Journal of Pain and Symptom Management, reported that patients who chose hospice lived an average of 29 days longer than those who did not, while 'Early Palliative Care for Patients with Metastatic Non–Small Cell Lung Cancer , ' a 2010 study led by Jennifer S. Temel and published in The New England Journal of Medicine, showed that patients admitted to hospice early lived 2 months longer and also had better quantitative quality of life.
Across the board, families involved reported being less stressed and had lower depression scores.
Don't Overpromise, Though
Hospice is a great solution for many patients, but it isn't the right solution for everyone. When asked what she'd most want to make sure hospitalists know about hospice, hospice nurse and educator McFadden emphatically said it would be that hospice — home hospice, that is — does not provide round-the-clock care.
'A lot of times families will come in, they have an elderly mom who could no longer take care of herself, there's a bunch of issues, she had a fall, etc. The family wants comfort care, so the hospitalist is like, great, let's refer to hospice. The family says we won't be able to take care of her, and a lot of times the people in the hospital think it's okay — hospice will take care of that,' McFadden, who was an intensive care unit nurse before getting into hospice, said. 'We won't. We can't. So, they get home, the family's like, wait, but the doctors in the hospital said you guys would do the care.'
In the case of geriatric patients, generally speaking, because of the way Medicare is structured, families or other lay caregivers are responsible for the day-to-day caregiving even when the patient is in hospice. Plans vary from service to service, but generally, home hospice services will include a weekly visit from skilled nursing, plus a certain number of hours per week of care from a nursing assistant to cover bathing, tidying, bed changes, and other support. Hospice staff is always available by phone, 24 x 7, should the patient have an issue.
'We try to help the family understand how to provide the care and steps to do each task, but we won't provide it,' McFadden explained. Even so, she'd advise patients and their families to choose the option of hospice if possible. 'Hospice is there to help you die a natural death at home. To me, I feel like if you get to die a death on hospice, you are lucky.'
Don't Let the Good Stand in the Way of the Perfect
Hospice may not be a perfect solution for everyone, but data showed that it is a very good one, both for patients and their families.
'The best care that you can offer a patient who is no longer a candidate for effective medical intervention is focusing on the patient as a human being, an individual, focused on humanity and care and not the science of medicine,' said Vialotti. 'Instead of treating their disease, treat them as a human being. Find out what they want. Find out what they would like this part of their journey to look like and then offer them the support that enables them to experience that.'
Hospice makes that kind of journey possible but is only available for patients if they're made aware of it. Hospitalists have an important role to play in raising awareness about this option when applicable and in accurately and compassionately delivering information about its efficacy and what it entails.
