JK: I’ll start by telling you a little bit about our network and then we can talk about how we fit in with what Amazing Care does.
I’m from Palo Alto originally, but I’ve lived here in Hawaii for 25 years. I’m very attached to the community here and attached to this work. I actually come from the HIV and AIDS community of San Francisco of the 80s when we were taking care of people who were dying. We didn’t have medications but as a community we needed to take care of people. The whole community was involved with how do we make sure that people have the care and support they need.
I became involved with Kokua Mau at the beginning, about 20 years ago. It’s a network that is working to improve care. At that time we talked a lot about improving care at the end of life. What we’ve really come to understand 20 years later is that it’s important to have a much broader approach and to be thinking about how we make sure that people have a good quality of life throughout their life regardless of what stage they’re in. And it’s become clear, it’s all about networking.
The Amazing Care Network is part of our network, we’re all fitting together. We’re all focused on how to build this caring community? The folks that Cora has brought together and the ACN members who come to meetings, we’re all thinking about these issues. It’s a very natural partnership. What we see over and over again is that if we can start early with conversations about what you need to be thinking about and what you need to get in place, it makes it so much easier if/when life crises happens.
We only have so much time. So, how are we spending our time? What’s a good day? What’s important to you? Who’s important to you? How can we help make these conversations happen? These are such important questions and it would be great if our community were better able as a whole to have them.
Q: Reflecting a little bit on what you said about the AIDS crisis and how that actually brought so many of these questions and some of these issues to light…
JK: One hopes that out of tragedy you can find something positive. And if anything, it’s the appreciation for life, the appreciation for community and the recognition that we have a limited period of time. I will say for me, after working in this space for 30 years, it’s so important that we contemplate what we’re doing and how we spend our time.
At Kokua Mau, we call ourselves a movement to improve care. One of the important issues that we want people to understand is the opportunity that Palliative Care presents. Too many people misunderstand palliative care and we want to change that.
Palliative care is a field of medicine that is geared at helping people live as long as possible as well as possible.
How do we help people’s quality of life? What can we be doing so that people live well, even if they have a serious illness? It’s a team approach, usually with doctor, nurse, social worker, chaplain, all helping to address the symptoms and the suffering that people with serious illness have. And also, the suffering of their loved ones, their care givers. It’s a holistic approach to health and illness — and hopefully wellness.
So the team of professionals works with the person and their important people to help address the stress and suffering. Usually people think of the physical suffering, pain, shortness of breath, and other issues that may come about because of the illness. And then we also look at spiritual suffering…Why has God done this to me? Where am I going later? The emotional suffering issues…Am I a burden to my family? What kind of a legacy am I leaving? What was the importance of my life? How is my family suffering? Who’s going to take care of my kids? These things are very real and cause very real physical symptoms. So for us, we are very clear that you have to have a holistic approach to how you care for people.
Palliative care is a relatively new field, and the good thing which most people don’t understand is that you can be getting curative treatments at the same time as you get palliative care. It could be from the time of a diagnosis when everything is overwhelming and confusing. There are so many very relevant, real questions…if somebody has surgery, chemotherapy, radiation therapy, dealing with the side effects from all of that and then the reality of pain management. How does it all fit together? The team approach helps with that.
One of the challenges and also the opportunities with palliative care is that it brings people together in a systematic way. This is perhaps what medicine should be. It’s involving the patient plus all the people who are important to them and then developing a care plan that meets their needs.
We talk about things like goals of care. What’s important? It might be: “I want to be there for my granddaughter’s wedding next summer.” Or, “I want to spend as much time fishing as possible.” So then, what are the treatments and what are the options, and how is that going to play out?
We work with amazing clinicians who talk to people about where they are, what they understand about their disease and what’s important to them. A lot of what I see my amazing colleagues doing is fostering conversation, taking time to listen, and getting a team involved to deal with the issues that arise.
So, how do we get our healthcare system to help people with what they really need? That’s where the Network comes in. We call it a Continuum of Care, from the time of diagnosis, how are you being cared for?
We approach this in three different ways. First, we need to put people at the center of the work and help people understand about the decisions they may need to make. Plus, where to find good information and resources in our community. Then what type of care should you be getting; what should you be asking for? Where is it? This navigation piece is really important for us. It’s really hard, figuring out what to say and what to ask. You have to figure out how the system is going to care for you.
We have a great website and a Speakers Bureau to make that happen. The second way is to help professionals with education and networking so they can do their job better. And the third approach is looking at systemic change, identifying policies or legislation that can help raise all boats.
A lot of people in our community are caring for someone. So it’s back to the networking. Who’s where? What are they doing and how do we all help each other find resources?
Q: On those points, how do you dovetail with Amazing Care?
JK: The speakers that come in to make presentations to the membership are always very relevant to what we do. Like with Kokua Mau there’s this organic movement of people knowing each other and networking on an organic level. It’s an oldschool model of talking with people as opposed to just going online to find something. I think we’re always happier when we see a face — somebody we know and trust. And there’s such a wide range of services and support needed to do all of this well.
A lot of people in our community are members of a Church or Temple and that’s a place where generations come together. You want to support your grandma. You love your grandma. And hey, there’s a talk at my grandma’s Church and she’s inviting me to come with her. For Jews there are the Holy Days when you sit and talk about life, forgiveness and the past year. This year, they’ve really used that as a way to focus on the whole concept of advance care planning. But all faith communities are about creating caring communities so this fits in well.
Stuff happens right? Auto accidents happen, things happen. Even as a young person…what if you get hit on the head by a surfboard? Are you prepared? That’s why we need to be out in front of people with these issues and questions. Who will speak for you, who will take care of you if something happens to you? More and more we’re gaining the opportunity to have these conversations, and it’s really making a difference.
Cora has pulled together amazing doctors who are incredible resources through their Physician Friend of the Family. It’s part of what networks do, they bring people together to work on projects, solve problems together.
Then there’s policy and legislation. At the moment I think that the biggest policy issue is that we need more in-home palliative care. So, what are the pieces that have to be together to make that change? There’s been a major lobbying effort here and that’s why we now have an in-home palliative care benefit from UHA called concurrent care while HMSA offers Supportive Care.
My advice to people, if they have a loved one in the hospital, is to ask for a palliative care consult. That’s my most important piece of advice, if you have loved ones in the hospital: ask for a palliative care consult.
One of the goals of this movement is to make these conversations the cultural norm. It happens slowly, person to person. And then you’ll hear someone say something like, “I didn’t understand how great hospice was, but now I do and now I’m telling my friends.” That’s how Amazing Care and Kokua Mau are making change.
Wouldn’t it be great if from within your health plan you got communication like, “We see you have this diagnosis, we’re going to send a highly trained medical team over to talk to see how we can suppor you and your loved ones moving forward.” Now there’s a concept.
I feel like we’re all pulling together in this direction, Kokua Mau and the Amazing Care Network. We have three primary focus of information: advance care planning, palliative care and hospice. That education, making people more comfortable, it all starts and finishes with conversations. How do we get people talking and how do we support? What decisions do you need to make and where do you find good resources and information? Like the Amazing Care Network, we’re looking for these opportunities. We’re in it together. It’s all about the networks!