Published November 14, 2019

Since 2017, our Iyashi Care team has assisted more than 150 older adults and their families with the challenges of living with serious illnesses and debilitating symptoms. Iyashi Care, a culturally sensitive palliative care program, was created with the understanding that high-quality care requires a strong relationship between the patient and the clinical team. This ongoing series of articles explains how Iyashi Care can provide meaningful services to you and your loved ones.

Goals of Care Discussions

Goals of care discussions are led by trained professionals to help identify the patient’s level of understanding about their situation, and lead to a deeper understanding of the patient’s true needs.

“What Iyashi Care focuses on is not only treatment and facing the illness itself, but what the patient’s wishes are, as well as the family’s,” said Dr. Yanami, one of the lead Iyashi Care physicians.  

This focus on understanding and the patient’s needs is a key service that Iyashi Care provides, with the team conducting these conversations on almost every visit to identify and evaluate the goals of the patient and their family.

“A good part of our two-hour visit is goals of care, to clarify what they want and what they hope for,” said Kanako Fukuyama, Iyashi Care social worker. 

The conversation always begins with the question: What is your understanding now of where you are with your illness?

Even though the Iyashi Care team may be aware of the patient’s diagnosis and symptoms, there can be a knowledge gap between the diagnosis and what the patient understands. “This question allows us to understand where the patient is at and how much information they have or are understanding,” said Kanako.  

The Iyashi Care team then guides the patient through a series of questions including:

• If your health situation worsens, what are your most important goals?
• What abilities are so critical to your life that you can’t imagine living without them?
• How much does your family know about your priorities and wishes?

The answers to these questions help the team further understand the preferences of the patient and their family during the course of an illness, and how best to prepare them for the future when they may have to make difficult decisions. The questions also aim to evaluate how much risk the patient would like to take for treatment options.

Kanako recommends that goals of care discussions should be held as soon as possible following a diagnosis, when the patient has the capacity to talk about it.

“Dementia patients can be tricky,” she added. “We try to ask simpler questions, like ‘Are you comfortable?’” Often in these situations, family members are required to be involved in the discussion. Based on the answers from the patient, family members can help decide what the loved one wants.

Although goals of care discussions are led by professionals, it does not hurt to have such conversations now amongst the family. Often, patients or family members may only have a vague or general sense of what they want.

“For example, even if their preference is to not go to a nursing home, they may have not thought about under what conditions or the timing in which they are willing to use those services,” Kanako said.  Some families have never truly discussed their wishes in detail, and not having those conversations can sometimes result in disagreements within the family. Older adult parents tend to assume their children know what they want, and defer to them for decision making. In other instances, not everyone in the family may agree on what the best course of action will be.

Tony was diagnosed with dementia, had life-limiting symptoms, and his health was declining. There was an option for him to receive intensive treatment for his symptoms, but with Tony approaching his 90^th birthday, two of his children felt that was not a good choice. However, his youngest child wanted his father to continue treatment as long as options existed.

“Quality of life is taken differently for each person. In this situation, the definition differed amongst the siblings,” Kanako said. For this case, the Iyashi Care team facilitated a meeting with all three siblings, giving them a place to express what they hoped for and discuss concerns, and reach a consensus.

Because a patient’s goals may change with time, the Iyashi Care team conducts these conversations quite frequently. While fighting cancer, another patient, Miyuki, initially said her goal was to continue treatment for the sake of her son. However, during a subsequent visit with Dr. Yanami and Kanako, she expressed the desire to discontinue the treatment. Eventually, the Iyashi Care team facilitated a conversation with her son so each side could express their wishes and thoughts more clearly with one another. 

One key thing Kanako is always mindful of is how much information the patient and the family want. “Not everyone wants to hear everything, so we always keep in mind what they would like to know,” she said. “At the end of the day, we do not make the decision; it’s ultimately up to the family members. And our role as the Iyashi Care team is to provide resources and tools for them to make these decisions.”