In today’s episode of the PT on ICE Daily Show, Modern Management of the Older Adult division leader Christina Prevett discusses her personal experience with end-of-life care, comparing different scenarios between family members who had hospice/palliative care and those who did not. Christina challenges listeners to step back and recognize if they are being mindful of the patient’s choices when nearing the end-of-life, and respecting the dignity of those choices as it relates to physical therapy treatment. Christina also reminds listeners to always advocate for their patients and be a resource, especially with hospice/palliative care as it is often not recommended as an option for patients.
Take a listen to learn how to better serve this population of patients & athletes.
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Hello everyone and welcome to the PT on Ice daily show. My name is Christina Prevett. I am one of the lead faculty within our modern management of the older adult division. We are in full-blown, like end-of-the-year mode. I hope you all had a wonderful Thanksgiving. We are getting ready for a really big 2024. Our next online courses are level one and level two, running January 10th and January 11th. And then we have two courses left for MMOA Live, Chandler, North Carolina, this next weekend, and Portland, Maine, that have maybe one or two seats left in them. And then, oh, hi, Hospice Nursing tuning in. We are really getting going for January so we are in Santa California Santa Clara on January 13th and 14th And we were in Maryville, Ohio that same weekend. Sorry, Santa Rosa and then I am in Greenville, South Carolina the 20th and 21st All right.
Let’s get talking about hospice. I graduated from PT school about 10 years ago and there always are some moments in your education that really stick out for you. And the one that to this day sticks out for me was we had a panel that came from a hospice that talked about end-of-life care. There was a nurse, there was a social worker, a PT, and a physician who all worked in nursing and they all worked in hospice. And this session about respecting the dignity of end-of-life care was so powerful. I left that session thinking, about what a job, is like to be able to facilitate that person’s dignity and respect at the end of their life. I remember thinking about the people that were on that panel and they all loved their job. but you could see that there was some sadness behind their eyes because they’ve seen a lot of beautiful and tragic transitions into the end of a person’s life that can be really difficult to manage. And I have been lucky, three out of the four of my grandparents, this is gonna be kind of a bit more of a personal episode, three out of the four of my grandparents have In my mind died of natural causes my grandmother on my mom’s side died at 89 my grandfather on my dad’s side died at 93 and my grandmother on my mom my dad’s side died at 97 she was almost 98 and I truly believe she was gonna live to 100 but um She ended up with stage 4 cancer, but you know mutated growth at 98. I feel like it’s natural causes And they all had different variations of their end-of-life care. And my grandparents, my grandfather and grandmother on my dad’s side, both ended up with hospice care and they received different types of hospice care. So I kind of wanted to speak a little bit about what hospice care is, palliative care in general, and just some of the personal experiences about how beautiful that transition in hospice care can really be.
WHAT IS PALLIATIVE CARE?
When individuals think of hospice or palliative care, they think that an individual is dying imminently. And this was true with my family as well. When I suggested that my grandmother, who was diagnosed with stage four cancer, be given hospice care, my dad thought that I believed that she was gonna die tomorrow. Hospice and palliative care is when the prognosis is not great when there are no thoughts for intervention, or when the person has decided that they are not going to intervene to try and change their diagnosis. And that was kind of what happened with my grandmother. So she was diagnosed at 97 with stage 4 cancer and she said, you know, what am I gonna do? She was of sound mind and she said, I’m not gonna fight this thing. It’s gonna make me feel really bad. I’m almost 98 years old. I do not want any intervention. She was very clear in that. And that was really hard for my family because she was the matriarch of the family. She had been so healthy. We literally all had her that she was living past a hundred and she decided that she did not want any interventions. And when she decided that I made the recommendation that we go to a hospice or we put her on the palliative care list here in Canada. And it was a really tough discussion with my family because they believed that, you know, she had a lot that they could still do, and it always came back to this discussion of, in palliative and hospice care, they are going to respect the comfort level of the person that is with them, and they are gonna respect their wishes that they’re not gonna do any extraneous interventions to try and change the cancer.
COMFORT & DIGNITY AT END-OF-LIFE
They’re gonna make her comfortable, give her dignity, and allow her to continue with end-of-life care. And I said, you know, as soon as she gets on the list, you know, we may not be accessing, you know, pain management and all those things right now, when that time comes, she’s gonna have the capacity to be able to access those services, access those individuals, hospice, support personnel of various forms that are going to be able to help her. Then she was able to access a hospice care home when the time was coming that she couldn’t be independent anymore. And so for her, she declined and there was a lot of conversations back and forth about, let’s try this ultrasound, let’s try that ultrasound. And I was very adamant about coming back saying that this was not what she wanted. She wants to be in palliative hospice care and be comfortable and surrounded by family as she starts to transition to the end of her life. And there was a time when pain was starting to come up because her cancer had transitioned to her bone and she was having a hard time toileting independently. It was around that time that our family had a discussion about putting her into hospice care. Again, my family had a really tough time with it, but when she was in hospice care, she was able to have visitors. There were not tons of lines and tubes and monitoring that was happening. The room was so quiet. She was able to have all the pain management that she wanted. I’m probably gonna tear up at this, but when it was her time, they did this beautiful pass through this archway that had angels and a cross, she was religiously inclined, and it talked about creating this pathway to the end of her life. And it was a beautiful thing. And I remember thinking that there are so many people who don’t have that beautiful experience at the end of their life because they are surrounded by so many lines and tubes and sometimes that’s just the nature of what happens at the end of a person’s life. But I felt so fortunate that my grandmother was able to have this transition to her afterlife in a way that was so respectful. My grandfather was 97, and she passed away just recently. And my grandfather, he was 93, and it was kind of the same thing that was happening. He was starting to decline, he was generally unwell, but he was 93, he didn’t really want any interventions, but he did not want to go into the hospital. And so we were able to access palliative care at home. And so by accessing some of those services, we were able to get a hospital bed in the room at that point in Everybody’s life we were able to do round-the-clock care. We had hospice Palliative nurses and palliative care physicians coming in and checking in on them. But the same thing we didn’t have was he didn’t have any lines and tubes He gradually kind of slipped into a coma. We didn’t do any extraneous measures except for pain management and he was able to die surrounded by his loved ones at home and again, that was something that I So kind of different versus going from a, you know, into a home of hospice versus transitioning into the afterlife at home, but still two very calm, very peaceful transitions into the end of a person’s life. And so I kind of lead with those two, one of, you know, peacefully dying at home, the other around, peacefully passing in hospice care.
And I want to kind of contrast that with my other grandmother. So I had a grandmother at 89 who honestly just did not want to live anymore. She had lived a long life. She had been widowed for a long time. And the love of her life, she never really recovered from that. All of her kids were grown. They were all doing well. And she just started to generally decline. She just wasn’t doing that great. One of her kids, she had 10 kids, and one of them called an ambulance. She was just kind of not thriving at the hospital. So they brought her to the hospital. Her labs were kind of all over the place. She wasn’t really doing that well. And she just didn’t, she wasn’t really doing great. They couldn’t really figure it out. They had decided not to do any invasive therapy. She ended up transitioning to a long-term care home. Now. This is not to say anything negative about long-term care though in Canada There’s a lot of conversation about how to create a better environment in long-term care. This is to speak a little bit more to like the medical side, you know So she was kind of getting around-the-clock care and she was on kind of hostilities hospice palliative, it was a very different experience where It just felt like, it felt a lot more lonely because she didn’t have that same type of support that my other grandparents had had. And she was, she ended up passing away in long-term care, which was adamantly what she did not want. She wanted to pass away at home. And she didn’t know when she was kind of just feeling unwell that it was the last time she was going to see her home ever again. She was very upset by the fact that that decision had been taken away from her because now she was too sick to go home and they wouldn’t let her go home. So there were a lot of sad emotions around my grandmother on my mom’s side transition into a long-term care facility that wasn’t kind of in the same bucket as hospice or palliative care.
THE REMOVAL OF DIGNITY AT END-OF-LIFE
And so why do I kind of bring all these things up? One of the things that I did not recognize as a person in geriatrics is how I was gonna be confronted with a lot of things around end-of-life care that I would not have expected going in. You know, you kind of go into PT a lot of the time thinking that you’re interacting with pain, and you are, but you’re gonna have these situations and circumstances where a person that you’re interacting with will take a turn. When you go into acute care, you will be having these individuals who were doing fine the day before and then you come to their room for PT and they’ve passed away overnight or OT overnight and they’ve passed away. And it makes you think a lot about end-of-life care. And Atul Gawande wrote a book called Being Mortal and he talks about our medical system. It was a book that had a profound impact on me, especially being a person whose loved ones have had different experiences at the end of their life. He talks about how our medical system takes so much work of metrics of safety and length of stay in hospital, things that are very, many times business-driven or a removal of risk, a removal of dignified risk-taking really in a lot of different ways and how there’s so much that we can do differently. One of the things that I think we have done right is having these beautiful people in hospice and palliative care who are really changing the way that a person is experiencing end-of-life care. As a geriatric physical therapist, when I’m interacting with individuals whose parents may be having a decline, if I’m talking to family or to individuals themselves, I am just a massive advocate for hospice and palliative care and what that may mean for them. And I think it is a wonderful way for us to be able to have discussions around end-of-life and not be afraid of those discussions. We are always trying to optimize a person’s resiliency and keep them living healthier for longer. But there are going to be people that we interact with where that is just not the goal. And that is, we are trying to create comfort. We are trying to move limbs to prevent stiffness and pain in those limbs. we are interacting in a very different way. And by leaning into some of these conversations and being able to have some of these really candid discussions, I think it is a really beautiful thing. As a family member who has had a lot of different experiences with grandparents and thinking even about my own aging experience, and what I would want, I think having those discussions is super powerful. And we have a lot of therapeutic alliances. We have a great role and rapport with many of our patients and we can answer a lot of questions. So I hope that you found this helpful. It was more of a personal kind of anecdote, but I’ve been reflecting a lot on it. Kind of as we go into the holiday season, you think about loved ones a lot. And so I hope you’ve had any positive experiences with hospice or negative, I would love to know what your thoughts and feelings are. If you can put them in the chat, I would love that. If you were listening to the podcast, if you want to reach out, please do. Otherwise, I hope you all have a wonderful end of your week and we will talk to you all soon.
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