Iyashi Care* has served over 200 patients since the beginning of the program, delivering culturally-sensitive palliative care to Our Community’s older adults. Two and a half years into the program, we interviewed three Iyashi Care team members to share their journey. In this five-part series, we dive deeper into how this program can benefit Our Community.
Iyashi Care provides a personalized approach to each patient and family’s situation. What works for one person may not work for another. Yet through these interviews and stories, we hope to show the many different options and Iyashi Care experiences.
* This partnership program between Keiro and Providence Health & Services provides the patient and their family with an additional team of doctors, nurses, and social workers that helps them navigate through their illness within a complex health care system.
Part 5: Palliative Care in Action
So what is the difference between palliative care and hospice? Do you handle end of life too?
Joshua Northcutt: Palliative care can be provided at any time at any point of an illness. Hospice, is only when you end treatment, and living without pain is kind of a focus. So you could still be aiming to fully recover but still find palliative care helpful.
Kanako Fukuyama: Yes, but end of life and death, may be a topic that we do go over and discuss with the family. Maybe that is why people may get confused that what we provide is end of life. But in fact, it’s not.
How often do you bring up death with the patient and their families? Or do they bring it up first?
Kanako: Unless we are informed by the family advance not to talk about death or prognosis we really think talking about how they want to be cared for towards their end of life, is important. To discuss this is important. Almost all initial visits we address that. It’s all part of their initial care consultation, and we also talk about goals of care. Like what’s important, what do you not want, and so on.
Dr. Yuichi Edwin Yanami: Like Kanako was saying, the way we go about this is, we ask, “How would you like to be cared for?” For death and end of life, or we also ask is there anything you’re really worried about for the future? What do you want to do when you’re dying?
What are some examples of when you provided palliative care to a patient?
Dr. Yanami: This is kind of a generalized comment, but it makes me sad sometimes when I see [for example] an elderly diabetic patient with mild dementia who is losing weight, and I am aware there are other reasons such as insurance mandate, but I notice that the doctor’s notes say to avoid sweets and eat a healthy diet. While that may be a standard goal of care for diabetic patients, palliative care helps by looking at the whole person and their situation considering condition, age, lifestyle, and even diet. Ultimately in these situations the goal of care may be more focused on avoiding diabetic shock. I will say, “I think your mom really just needs to eat more, and can relax a little bit about what ‘healthy foods’ to eat, especially given her age and her goals of care at this point.” I think it takes a little bit of courage to say it’s okay to be gentle and accept that care and recommendations can be modified when considering the full situation for your loved one. I think that’s not only a palliative care tool, but a geriatric care tool, [to know how to] balance the aggressive treatment versus the quality of life.
Kanako: While listening to Dr. Yanami’s example, it reminded me of this cancer patient who came to us newly diagnosed. He was trying to manage the cancer and symptoms by a strict diet. He was kind of complaining that it was really tough, but the family was really encouraging him and pushing him to continue. And I initially wanted to say, “be easy on him and if he doesn’t want to do the diet, it’s up to him.” But as we spent more time with him, we learned that he wanted to live and he needed to stay on the diet in order to live longer.
It’s kind of an opposite example, but for somebody whose goal is to live, then that’s what we encourage.
But if this person didn’t want to go through that, made peace with his prognosis, and wanted to cope with this, we would say to the family “His diet might not make sense.”
Dr. Yanami: Also, for medications. These medications are helpful for you, but the benefit may not be that big. [If] mom doesn’t like to take medications, let’s try to prioritize the most important ones. Maybe you don’t have to worry about those that are less likely to cause immediate harm. And maybe balance that [factor] with the fact that you’re always yelling at her to take medication.
Which reminds me, there is also a patient living in an assisted living facility, and every Friday she gets her hair done with a caregiver outside the facility. She is on water pills because of high blood pressure, which means she needs to go to the bathroom frequently. So, for this patient, I prescribed no medication on Fridays so she doesn’t have to worry too much while she’s out. I think that’s pretty much palliative care in a nutshell – finding the needs of our patients and being able to help their medical needs meet that.
What is the difference between being an Iyashi Care social worker versus a social worker for older adults?
Dr. Yanami: I think hospital social workers chase around finding facilities or caregivers and may not have time for what the social worker really wants to do: to talk to the patient and ask them what they want to do. Iyashi Care really has the luxury of really being able to do what you really became a social worker for. As opposed to being a navigator.
Is there anything that you learned from this program that stands out to you?
Dr. Yanami: Sometimes there are a lot of difficult situations out there… and there’s no easy answer. You enter this field thinking you can help everybody and I feel like I may at least emotionally help them but physically or structurally, sometimes there is nothing we can do… and that’s really hard.
And at times, medically there’s nothing we can do. Our job then is to just be there with the patient and their family because sometimes that is all we can offer. However, during those times, being there is the most important thing. And you just have to listen and find out what they want. This is what I think I learned.
Joshua: I notice the level of family involvement and care. I see how they are involved in various ways and engaged in a good way.
Kanako: Similar to Dr. Yanami, there’s a lot of cases where we just have to wait and see. I kind of feel frustrated at times because I can’t really do anything, other than to just make calls and show up at visits. Something that we gained out of this work is that we get validated too. We are encouraged by patients and families as well.
Joshua: I agree too. I definitely hear, “oh we’re so thankful we can call Kanako during the day or Dr. Yanami during the weekend.” Even if they don’t contact us a lot, I hear that a lot, that just us being there could mean something to them.
Any messages to the community or future patients?
Dr. Yanami: If you’re struggling with any pain or difficulty, I do want patients to reach out sooner rather than later. It breaks my heart when I hear a comment like somebody had cancer, and he was having such a hard time but now he’s better. I wish they called at that time [when they were in pain] and I could have probably helped him so that I can make their lives a little bit easier. We do help with pain control.
Kanako: Just reach out, inquire about Iyashi Care, and see whether where you’re headed is the plan your aging parents or yourself really want. Like if you have parents who are exhibiting early dementia, but don’t have advance directives or things like that, then you probably want to create those documents before it’s too late and we can facilitate that conversation. Reach out to us so you can be prepared.