working in palliative care: ‘relationships are such a key part’ of whole person care
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both david henderson, right, and amber thibault have dedicated their lives to palliative care, amber in western canada and david on the east coast.
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the words palliative care are often whispered. when people hear the term palliative, they liken it to death, and in many ways, that one reality of life remains taboo, with people shying away from it as much as humanly possible.
but palliative care isn’t just about preparing to say goodbye—it’s an experience driven by compassionate healthcare providers aiming to improve someone’s quality of life when they have a life-limiting disease.
according to amber thibault, founder and ceo of rural care co, a palliative care provider in central alberta, it involves anything that the patient needs to “bring value to their day,” whether that be spiritual, religious, physical or mental.
“we can’t take away death, and we can’t take away all the symptoms,” she said. “in the physical realm, we really have the conversations around how to bring ease into the transition, but not take the transition of death away. we don’t have every tool to beat death. we just have things to ease it.”
from hard skills medical providers have, such as administering medications and conducting tests, and soft skills, including compassion and creativity, providing palliative care is a measure of both and utilizing whole patient care.
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in some cases, the “use of humour, which always throws people when thinking about death and dying” is also important.
“this is incorporated into the care we provide, helping people realize that it is both okay to shed some tears and to laugh,” said dr. j. david henderson, senior medical director with palliative care network and medical director with the colchester east hants palliative care service. “we joke sometimes that we call our palliative care unit a palliative care unit and comedy club.”
he notes that every visit he has with a patient doesn’t feel complete without both laughing and crying, as the range of emotions felt during palliative care should all be felt.
both david and amber have dedicated their lives to palliative care, amber in western canada and david on the east coast.
palliative care work is an ‘all-encompassing’ team effort
when someone is receiving palliative care, they don’t have one nurse or one doctor checking in on them. they have an entire team addressing the various aspects of care that are important when someone is dealing with a life-limiting disease—and no one person is more important than the others.
david stumbled into palliative care during his residency, when there were two options for a particular learning requirement, and you didn’t get to choose. once there, the entire process “struck a chord” with him, and he followed that through his career.
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he notes that when “we think about that person and that whole person care, relationships are such a key part of it all.”
that means including the patient, doctors, nurses, social workers, spiritual guides and even the patient’s family—whoever they may be.
“sometimes it’s that best friend, or neighbour, or whoever’s really walking that walk with you,” he said. “helping them go through this as well is a big piece because, again, we all need our supports around, and if our supports are getting exhausted and getting beat down, then they’re not able to be as much of a support.”
amber echoes that sentiment, having been on both sides of the spectrum, working with family members during her time as a birth doula as well as a palliative care provider. she notes that palliative care teams have to function as a unit to address all the different stages of the journey toward the end of life, from physical symptoms to emotional pain to fear of what’s next, and everything in between.
“as a palliative provider, we are sometimes a breath of fresh air for patients because they can actually verbalize what they’re thinking and they’re not afraid to offend or scare us or harm a relationship,” she said, remembering when she was working with a patient who couldn’t be as honest with his daughters about how hard it was to go through what he’s going through because he was still acting as a protector for his children.
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she also notes that, since no two people will have the same experience, getting creative is a critical way to look at the team you have and the team the patient has and work together toward a common goal.
“no death, no end of life, no palliation is the same, and it always comes with the patient that adds diversity to it, but then their family adds diversity and their community adds diversity,” she said. “your number one soft skill is that creative thinking with the family and patient community in mind. creatively think about funding options for them. creatively think about resources for them. creatively think about how to navigate the family system and what other aspects are influencing care for this patient.”
trying to foster a ‘good death’
the terms good and death often don’t fit together, but in the case of palliative care, that’s the exact goal that people like amber and david are aiming for. david, who remembers an old friend saying to him that being good at what they do is about “knowing dying well,” is all about “knowing what people go through as they approach end of life, and then coming in armed with that.”
by doing so, they can press pause on feelings of fear about what the road ahead for each patient might look like.
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“there’s always sadness there and some grieving, even before somebody dies,” he said. “being able to help normalize some of that and really trying to convey to people that, ‘we’re here to be on your team’ and any question is a fair question, and we will do our best to help.”
when people know and understand more about their journey, what’s going to happen, and how the process will be approached by their care team. david notes that by making patients comfortable enough to say whatever is on their mind, it’s easier for them to address concerns and worries, whether big or small, all while putting some stuff to bed so they can focus on what’s really important.
that involves relating to patients on an authentic level, and not being the same type of medical provider they’ve seen throughout their health journey thus far, with rushed appointments and medical jargon-filled conversations. you have to spend the time with them, and for people in palliative medicine, getting to do that is a real perk of the job.
“we’re so fortunate that working within palliative medicine, and it’s something that’s being challenged more and more and more through the years, is that time (you have with patients) because it does take time,” he said. “you can’t rush this.”
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like david, amber notes that providing people with a good death is “the most fulfilling part of the job.”
it doesn’t mean that the person and their families end up welcoming the death, because good deaths still have heartbreak and pain and grief. it just means that the time leading up to it was filled with as much peace as possible—for both the patient and their families.
“to me, a good death is when that person has passed on and died, that they, before they took their last breath, they were at peace, and the family after they’ve taken their last breath, not that they’re okay, but that they feel able to stand, if not on both feet, but at least on one food to get some grounding and continue on the skills and coping resources that we’ve given them so that they can transition to what this new life looks like,” she said.
because on the flipside, when a death is traumatic, or people don’t really have time to process their situation, it becomes one of the most heartbreaking parts of the job, having to watch knowing that if palliative care could have been involved sooner, the entire process could have been more peaceful for both the patient and their families.
dealing with the inevitable lows of palliative care
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heartbreak and death go hand in hand, and palliative care workers are not immune to the grief of building relationships with these patients and their families. they are professionals, but they’re also human.
but they do find ways of coping.
for amber, utilizing self-reflection is a huge part of processing her own grief and sadness while working in palliative care.
“professionally and personally, what is my point where that breaks my heart? so, really identifying that for myself. personally, it’s when a couple has their last kiss. that breaks my heart,” she said. “professionally, it’s when they’re in crisis, and we’re not able to help relieve some of that crisis moment.”
she notes that after identifying what guts her the most, the next step is putting up barriers, not to ignore the feelings, but so that she can anticipate the moment and prepare for it to stay in that professional realm while still being able to honour that the situation is hurting her, too.
“for example, when i anticipate that a couple is going to have their last kiss, i make sure my eyes are glanced down at the floor because i know that a tear is going to stream and i firmly believe that is fine to show emotion, but emotion that is contained so that does not detract from the others’ experience in the room,” she said.
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she also always gives herself time to process later, when she’s alone, through journaling, lighting a candle for the person who has passed, or playing the music that person loved and listening to it afterward.
“(it’s) another way to honour the life that we did see end, but also allow us to process what we need, and sometimes you cry a little bit during the song, and then the song is done and you wrap that up with a deep breath,” she said. “we’re also big in the palliative world. we read obituaries. we talk about the person when we get that notice of their funeral announcement, and really, we talk about their family.”
for david, one of the worst things about working in palliative care is having to prove to people the value of being able to care for people as they head toward death. oftentimes, he and people in the industry have to convince governments and other powers-that-be that palliative care may not be “sexy”, but it’s a vital component to healthcare and should be treated as such.
he notes that, because of the specific industry, it’s crucial for him and others to continue advocating for palliative care and its place in the system, as they’re the only ones able to do it.
he paraphrased a statement from dr. harvey chachanov, a psychiatrist out of winnipeg:
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“the dead are no longer here to advocate. the sick are often too sick to be able to speak up for themselves, and the bereaved are often too overcome to be able to speak up,” he said.
david notes that “unless you’re in it and facing it, the rest of our society, and our culture, doesn’t want to have to think about death and dying. so, it’s hard to sell through the years.”
the evidence supporting palliative care shows that it can make a huge difference in a person’s life, even as they approach the end of it. one study that david recalls even found that some people who receive adequate and quality palliative care not only get more life back into the time they have, with significantly less feelings of anxiety, depression and improved quality of life. the participants even lived longer, getting more quality time than expected.
he continues to advocate for palliative care in the country to foster more change, because even if people don’t want to talk about it, “palliative care is your friend.”
caring with passion and inner resolve
being successful in palliative care involves a lot of self-reflection, according to amber. the people called to the job have to face both the heaviness and some of the most fulfilling work they will ever do.
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“what are your comfort areas with death, and what are your uncomfortable areas? who are the patients that your heart can bear to handle, and who are the patients that you have to know you need to ask a co-worker to tend to? understanding what your limitations are is huge to be successful in the palliative world,” she said. “when you deal with that day-in and day-out, if you don’t have a practice in place to process, to honour and to release on your own, it’s going to weigh too heavily where we see that burnout.”
david believes that it’s also about understanding grief on the deepest level possible. he notes that stephen jenkinson’s specific perspective on grief is helpful for people considering palliative care as a career.
“grief is the love that you have for somebody when they’re no longer with you. love is the grief that you have while they’re still with you, and it’s very much a mirror image,” he said. “the only reason why we grieve is because we’ve loved somebody. we’ve cared enough about that person or that pet or whatever, that it meant that much to us. so, if we can really get our brains to think about grief as this is what i’m feeling, this is still that love i feel for that person, in many ways, i don’t want that to go away. why would i want to stop loving that person?”
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he notes that hearing that perspective changed him, helping both his personal and professional life, allowing him to carry the hard thing while still appreciating that it’s a good thing, even if it hurts.
that inner resolve is often found in people who work in palliative care because oftentimes, they don’t choose the job; they were exposed to it and found a level of passion for it, knowing that what they were doing mattered significantly, not just to the people they help, but to themselves, too.
“almost everybody that you meet that works in palliative care, not only do they work in palliative care, they’re passionate about it,” he said, later continuing. “it sounds almost trite and too simple, but it really is, you know, the work feeds your soul.”
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