As part of a lifestyle and aging series, we’re working with renowned photographer Terry Lorant to showcase inspirational leaders in the industry. Each month, we’ll feature an inspirational member of the Amazing Care Network community who is using his or her voice to empower others in the collective aging experience — and read, in their own words, what the Amazing Care Network’s efforts mean to them.

Q: For a lot of people, hospice work and figuring out how to work with the dying is untested, new territory. Can you talk a bit about that…how you came to it, how you learned to be in that space…

For me, it started in the early 1980s because as someone working in the human potential movement, I had the privilege of leading a 7 day course for the gay and lesbian and transgender community in San Francisco and that was a live-in program. In 1983 or 4…you go back to that time when HIV-AIDS existed. We didn’t know enough about it yet to even know that it was a virus to start with. And of course the community there was being hugely affected by it. That brought me closer to the disruption of a young person in the ascent of their life being engaged with an illness which for all intents and purposes was terminal without exception. And that brought me closer to the dilemma, as a human being. I had friends who were involved in that process (I hadn’t yet returned to medicine) either as people with the illness of as caregivers for those with the illness, so that was a beginning. When I returned to medicine in ’85, I had a distinct interest, so that when I was board certified, came to work here at Kaiser at the Honolulu clinic, I made it clear I was very interested in HIV-AIDS and within a very short period of time I had 5 times the number of full blown AIDS cases as any other internist in the system. And we didn’t have a specialist at the time who did both the primary care as well as the infectious disease. So this brought me closer, and I always ran out of offers, other than let me come to your home and sit with you because I didn’t have enough antibiotics, or enough cancer therapy, or enough of anything, but I can come to your home. So I would go into Waikiki or up to Tantalus and be in someone’s home, to say, that I care about you, and caring doesn’t stop when medicine stops.

That was a huge thing in my life, and those people gave me the gift of trust. And in that period of time I lost everybody. But I stopped regular internal medicine practice in 1995, the exact year that the highly active anti retroviral agents came out. So, that was an introduction to say, that this disruption is really important because for anyone with a chronic illness it’s the transition from the hope of cure to the anticipation of a future and ultimately a death related to this illness. And I was very interested in the transition.

Then I got a gift from a couple of physicians here who came to me and said, Geoff, you worked with the Care Management Institute in Oakland (this is a national Kaiser effort to implement evidence-based medicine) and they said listen, we want to be palliative medicine specialists, and it’s kind of an early field, but there’s a training program at Harvard, and we’d like you to organize and sponsor us to go to this training program. And so I did. Two physicians and a nurse, highly respected people in the medical group, went to Harvard, spent a week with Susan Block and her husband, came back, implemented a project, went back to Harvard to share their project with other teams from across the country. Dr Block and Dr Billings are really icons in the world of palliative medicine. So I got the sponsor role for Kaiser’s first region-wide palliative care team. We did it as a regional program, because we’re a small region; the whole state of Hawaii is smaller than the Oakland Medical Center I think.

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As a sponsor, I spent 2 or 3 years attending palliative medicine meetings and doing consults with them on the floors without getting to really do it, hands-on, myself. So when I left and became a volunteer in hospice, that brought back everything they had taught me, the fact that the team is more important than any kind of hierarchy and these physicians really got it in this training program that their nurse partners, their social workers, their nurse practitioners, their PAs their chaplains, each role was required, because this was the key transition. And their goal was, how do we treat someone with a serious illness, and we don’t need to talk about their dying, but, if someone has stage 4 heart failure, and they’re not getting a transplant, they’re not coming back from that. Or if they have stage 4 cancer, without a miracle (and we’re going to be open to miracles) they’re not coming back from that. This is a new path. So they shepherded people on the path, and they did home-based care, home-based symptom management. They did some aggressive things in the home that were really break-through kinds of things. And I was taught that by the team. So when I was introduced to hospice, team-based care was natural for me. I just wanted to know more about how they did it. I needed to know the rules. And then eventually I was in the first class nationally of people to become board certified medical directors, meaning, that you are already board certified in palliative and hospice medicine, but being a medical director is a little different, because that requires leadership skills, team development skills, you need to understand compliance, the rules and regulations, you need to understand coding, the finance of hospice, pharmacy management and so forth to benefit your hospice organization so that your hospice organization can make the difference they want to, and, they’re not at risk. For auditors and others who are asking ‘are you using this money wisely?’ Remember, today, hospice continues to be the only capitated payment that the government is offering any caregivers in the world. So, hospice receives a per diem payment for a patient that is qualified and on the hospice service. So they need to be certified to be on the hospice service. And even though this is antiquated…I’m sure it will be changed some day, but currently you need a six month prognosis to be eligible for hospice care. You need to be willing to have given up your acute curative care treatment strategy. That doesn’t mean you’ve given up care. And part of hospice is we want you to know that you’re going to get more intense care than when you were being treated with chemotherapy. You’re going to get more intense care, because we’re going to address your physical concerns, your psycho-social concerns, your emotional concerns and your spiritual concerns, your family concerns and your related concerns. We’re interested in what is your vision for this part of your life? And if we can take away pain, and we can take away difficulty breathing, and you can do that better, then we’re happy.

This is also true for me…if I can support someone by taking away pain, taking away difficulty breathing, using a medication strategy, using visualization, using meditation, however that is, and this person doesn’t take advantage of creating a vision, then I won’t have done very much for them. So, if they’re stuck in the medical paradigm called “I’m doomed”, then I’ve kind of failed, as it relates to the pivot to find “what’s possible now?”. And sometimes what’s possible is what’s possible in hours. What’s possible in days…weeks or months? So that’s how I came to it.

And then of course, all the nurse managers who were experienced, especially the very well-trained nurses in the homes that we lease, could help me learn symptom management more effectively. They could help me understand how to be with families more effectively, how to bring me in in a timely way, how to keep me out in a timely way. Sometimes it’s the wrong thing to bring a doctor to the house because that’s what they had at the medical center. So the nurse case managers know about the timing, the communication. So back to the question of how I got into this work…patients, caregivers, families, all giving me the gift, all introducing me to the opportunity, creating a welcome, where I can be vulnerable. If you’re in internist for 21 years, and now you’re in a new sub-specialty, you can either pretend you know what you’re doing, or you can open up yourself and say listen, I’m learning as fast as I can, please teach me. And the group at Hospice Hawaii was good enough to do that, and trust me, that we would make it work.

Stay tuned for Part III – to be continued.
Story and photos by Terry Lorant.