Published April 7, 2020

PART 3: Difficult Conversations with Family Members

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.

Iyashi Care assists with facilitating conversations with the patient and their family members. What kind of family situations have you worked with?

Kanako Fukuyama: We see all kinds. There are families where adult children say, “Mom, you need help,” but their mom will say, “Oh, I don’t need help.” And then there are patients who say, “I don’t want to bother my children. I don’t want to burden them.”

Every case for Iyashi Care is different. I feel everyone should call and find out what works for their specific situation because there are many factors like family dynamics that affect it. But for Iyashi care patients, families are almost always involved.

What kind of conversations are held?

Joshua Northcutt: One of the things we do is we go over goals of care. It’s like advance care planning that we conduct every six months, since preferences may often change.

How do you conduct these conversations? Are there any challenges you see?

Dr. Yuichi Edwin Yanami: We try to facilitate the conversation by finding common ground. If the condition is urgent, then decision-making may need to happen quickly. It’s the phase between when something hasn’t happened for the last three months and when something can happen at any moment… that’s when it’s harder to bring the family together to discuss these preferences.

Kanako: I don’t think trying to talk to them separately is very effective. We usually provide updates at the same time so everyone hears the same thing.

Dr. Yanami: I also think for Iyashi Care patients, usually there’s a lack of communication among family members. Several family members may express different feelings, and it’s usually because they’re not talking [to each other].

What about cases where not all members can gather for these conversations?

Joshua: If they can’t make it, we’ve had cases where we talk with one sibling, and ask them if they want us to call their sibling to explain the situation. That would be done through phone calls. In person is best but you could get a lot done on the phone too.

Is that part of the service for Iyashi Care program?

Joshua: It’s part of the nurse care coordination.

Dr. Yanami: For example, maybe we look at the advance directive and we see the son as the first name on there, but he’s not present. We aren’t sure if he’s aware, so we ask Josh to call and make sure that everyone is on the same page.

Is that kind of case common where one son is the first name on the advance directive but they aren’t the ones taking care of the patient?

Kanako: I see sometimes on [the] advance directive that the primary designated power of attorney is the eldest son, but then the one that really coordinates the day-to-day care is the daughter, whose name is not even on the advance directive. I want to say I’ve seen that a few times.

Dr. Yanami: However, often for the son, he is not very… assertive.

Kanako: That’s true. It’s not as huge a problem as it may seem because the son would often times defer to the sister. Having too many people on the directive may be a problem, but I still think people should have  at least one additional name written on these advance directives in the event that the first person written is unavailable or unreachable.

Dr. Yanami: The parents sometimes put the eldest son on [the advance directive] regardless of his ability to make decisions or his involvement.Which is okay to write… but in reality, it should be someone who is closest to you and doesn’t have to be the eldest child.

What are topics are often covered in these conversations? Or have you noticed anything that you’ve encountered multiple times?

Kanako: I think the biggest disagreements or differences in opinion among families are whether their parents need facility care now or not, what type, and who is going to pay. And another is the life-sustaining method, like items covered in POLST (Physician’s Orders for Life-Sustaining Treatment). One family member thinks their mother wants a DNR (Do Not Resuscitate) order, but another sibling says, “Oh, do everything to save her.”

I think often times among siblings, one feels that the parent needs care now, while others think they’re still okay.

How do you ensure equity among all family members during these conversations?

Kanako: So far with our current Iyashi Care patients, I have never had a case where one individual dominates the conversation. But what often happens is that there is a family member who doesn’t say anything. So, we make sure to include them by saying, “You’ve been quiet, do you have anything to say?” If we have a reason to believe that they didn’t speak up during that conversation, I would follow up with a call.

Dr. Yanami: You see, I think when we see the patient, we also assess whether the family is cohesive and is on the same page or they seem all over the place. It’s not just medical problems, but sometimes that [family dynamics] is what we need to work on. That becomes part of our care plan, to try to bring them together. Maybe the medical part may be falling on the primary caregiver and they’re handling that already. But when we go in, we try to prioritize what they need or where our fit is for this family. We are not just looking at the patient’s blood pressure, but the overall situation, right?

Joshua: Yes, that’s what whole person care is basically.

Do you normally get a consensus in these conversations?

Dr. Yanami: There have been cases where the patient is stable for now; however, the family has not been able to agree on a future care plan in the event of changes in the patient’s condition.

It’s hard to imagine what the right thing to do is until that moment comes. If you’re really sick and the doctors ask if you want the ventilator or not, you’re not in the same mindset as when you’re stable.

As much as we like to be proactive, I don’t want to force it either, because if you force it, the conclusion may not be appropriate either. Sometimes, we keep decisions unmade until the moment they need to be made. And that’s okay too. But hopefully we have planted enough seeds for the patients to think about it. And hopefully they have thought through by then to reach a conclusion.

Any specific examples you can share about families with disagreements?

Kanako: There was a patient living at their son and daughter-in-law’s place. I think the patient and the son didn’t have a good relationship to begin with. The patient was losing her ability to converse in English, and was more comfortable speaking in Japanese, which created a language barrier between her and the son and the daughter-in-law. Initially I thought it was just a language issue, but I think it had to do more with their history and family dynamics.

What did you do in that situation?

Dr. Yanami: I think the big thing is trying to have each side understand and point out things that need to be changed as well as accept things that cannot be changed. Like, “Mom, you have to change this,” and then to the children, “I know you but you cannot change that.” And for this family, we would explain it in both English and Japanese.

Kanako: I think part of the work we do includes trying to help them prioritize and see what the critical issues are, and what’s something that they can work to let go. For example, if it’s a safety issue then we will say to the patient, “Don’t climb that ladder.” What we can do is to provide safe space for them to express their concerns and frustration while continue to assist with communication.

Read part one of this series here

Read part two of this series here