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: Can you recall any specific cases that may have offered memorable lessons?

I had an experience with a young guy who had a very slowly progressive form of muscular dystrophy…until it became aggressive. He grew up, loved playing video games, actually worked for one of those wonderful game stores. He was very fluid, very fast at the games, very creative and inventive. But then his disease process became more active and he lost his fine motor capacity, and there was a very rapid downhill course to a point where he became ventilator dependant. He was in his late 20’s, but they were good enough to accept him at a children’s and adolescent community medical center where they had experience with ventilators, and experience with younger children who have chronic neurological and development problems. So he was living in this center. He was having difficulty adjusting and he was also having some difficulty as his disease progressed with a condition called delirium. Delirium is specific…it’s not like when we say ‘hey, you’re delirious’. It’s really a very specific medical condition that can cause either an extreme confusion, agitation and symptoms that suggest that someone is in pain, or, someone has become insane/psychotic/is breaking…that’s on the one hand. On the other hand, delirium can be very quiet, very deep, can be almost comatose, and if someone doesn’t understand that this is delirium and that it’s treatable, then it may be ignored. His delirium was more agitation, confusion and reaction, so he became a “difficult” patient…needing things in the middle of the night, ‘why doesn’t he just go to sleep? He slept during the day…why doesn’t he just get with the program and stay awake during the day and sleep at night?’ And so on.

So he, on his own with help from his parents, bless his heart, said, I need some help here, and the help that I need is I need someone to work with me on preparing to die. And I want to be able to signal my own process of dying. And his parents, stayed with that conversation, day after day, week after week and then they invited us as a team, Hospice Hawaii, to come in. And it was a big deal for the facility. Because in the facility, their kind of culture is, ‘nobody dies here’. It’s kids. What would happen is…”Johnny’s not in room 3 anymore…” But this notion of a team coming in to talk about active dying…no, that’s not part of our culture. So it required a really skilled social worker to come in and work with their social work team, meet the doctors, talk to people, introduce the notion that we’re in a conversation, not about dying, but about how to live this part of life more fully. And then, gently introducing the team members and the physician leader there…a phenomenal guy…he allowed me to participate with him in the care so we could get some of the palliative interventions that they were not as familiar with. We needed to that, because if someone is having delirium, you have to ask, are they capable of having a conversation about their future that is grounded in their reality? Or is this the delirium process? Is this some form of a psychosis? We can’t have people who are nuts saying take me off the ventilator, I’m having a bad day.

So, that was a process there and then, he called it, he said, now the time is right, I’m prepared. And this was after weeks with the social worker, and the chaplain, who is still, by the way, years later, very closely with the family. It’s an ongoing process…it’s a developmental process, and it’s important to realize that the development is not development toward a goal, unless you focus on “toward”. Because in this kind of process, at any moment, somebody raises his hand, or in this case, raises his finger and says, “oh, I decided, we’re not doing this. Thank you for participating, I’m good with how things are. I’m staying”. He didn’t choose that. When his time was right, we transferred him, with his ventilator and the whole setup to one of our homes where we had a bedroom suite for him, plenty of room for family and friends. We brought him in to that facility, and the first night was, we’re just going to spend the night…this is for you, your mom and dad…the social worker is here, the chaplain is here. You can look out into this beautiful valley, see day and night, this is here for you, and this is also an opportunity, so you can kind of test, is this true for me? Am I actually going to engage in the process of ending my life by asking others to collaborate with me? This state by the way, does not allow for the prescription of medication to end life. We don’t have the Choices program available here. So again, that’s another tightrope. And in his case, it was not a matter of adding something to end life so much as it was withdrawing the breathing because he had no inherent diaphragmatic or chest movement that would allow him to breathe without the pressure of the ventilator.

I had outlined to him and to his parents, these are medications that we are going to use so that you don’t feel breathless. These medications are going to allow you to feel at ease at a point where you would otherwise be breathless. Now, we’re not going to do this all at once; it’s not going to be dramatic. What we’re going to do is, we’re going to rest in the comfort of saying goodbye, and then overnight, not during the day, but overnight we’re going to be with you and we’re going to change the ventilator settings gradually. We’re going to keep the pressure where it is, so that you’re never going to not feel the pressure, but we’re gong to decrease the oxygen content of what’s being supplied. And then, at some point, we will decrease the frequency, and then at some point we will decrease the pressure, but my promise to you is that you will never feel that you’re suffocating. You will never feel breathless. And, you and I will be in communication, as much as you want and you can tell me with your eyes, just move your eyes back and forth to say ‘Geoff, stop this, we’re not doing this’. You have a choice at every moment.

We began that process the next night. He and his family were ready. We had a ceremony. There were goodbyes. And about 4 or 5 hours into the process, he’d been sleeping comfortably. I went up and I held his shoulder, just put my arm on his shoulder and I asked “how are we?”. And he looked at me, and he knew that I was asking him about the process. And he looked directly in my eyes. And he didn’t waver. He couldn’t nod. But it was a clear “here we go”.

To be given that kind of responsibility, at the same time the privilege, of walking with someone…

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I view this whole physician friend of the family thing as accompanying someone, walking side by side, sharing the journey. I learned a long time ago, that I can’t express some form of compassion if I haven’t experienced the pain in my own heart. If I haven’t experienced the loneliness, if I haven’t had my life disrupted in my children, my spouse, myself, in others or if I haven’t assumed the hurt of patients I’ve cared for over 40 years, I’m not in a good place to be compassionate. Compassion starts with, I experience my pain, not yours, and if you’ll allow me to walk with you, I will do my very best not to let go of that vulnerability that I’m having in the face of your gift.

This reminds me of Cora…she is so not the typical American ideal of the successful health care executive. She’s a rock star for big health care organizations. And for her to make the decision to move away from that… Now, she had a vision about what was possible for individuals, small companies, mid-sized companies, but it was purely her vision, at a time when other people were not understanding, what might it mean to be self-insured? And she of course was a really legendary executive in big health care companies where it’s large employers, and mid-sized employers. (Who cares about individual insurance if you’re with Aetna for all of the western United States, or Health Net for all of their states?) Cora is an individual with vision. She had no proof that this was going to work. And…she hadn’t really had an entrepreneurial life before beginning Sterling. But, she knew. And that kind of combination of vulnerability and confidence, and her ability to listen, and communicate, completely inspires me. It did at the time when she was the president of this organization. And so, with her when I hear ‘do you want to take a walk with me?’…I’m already up and walking only asking ‘ok, where’s next? I don’t care where we’re going, I’m with you.’

I think the potential for Amazing Care is enormous. It’s potential that is far down the road. We’re not yet able as a culture I don’t think, to recognize an opportunity of a dedicated support group outside of cancer care, a bereavement support group. It would be rare for example if there were any heart failure groups. Or any chronic lung groups. They’re needed! People in this country don’t think, because all of our gadgets, and things that we can do for instance with heart failure…we can put them on pumps, we can give them small machines that they can carry around that are beating their heart for them. We can give them renal dialysis without catheters…we can just dialyze them on the surface…we can do lots of different things, but here’s the truth…chronic heart disease kills as fast or faster than Stage 4 cancer. Chronic lung disease kills as fast or faster than Stage 4 cancer, and we pretend it doesn’t. Most people with chronic lung disease don’t even know they have it until the tipping point, the point of no return where lung function was fine for their activity level. They go to the hospital and feel much better. But they don’t understand that one of those hospitalizations is going to be terminal. That’s it. Same thing with heart failure.

So, we need to understand as a culture, how do we signal for people that a transition is coming up before it becomes a big disruption. And, disruption in my terminology is where all of my planning, even if it’s to go to the doctor regularly, and take loads of medications, go to the hospital infrequently, get the chemotherapy, do the radiation…even if with all of that, what will I do when something disrupt all of those plans? That then leaves a wide open space where you’re kind of left with a quiet moment of ‘who am I? What is my purpose in life? Would somebody talk with me about how I’ve lived? Have I lived a valuable life? I regret certain things, I’m embarrassed by certain things, I’m resentful about certain things, I hate certain things, other people hate me for things that I did or didn’t do. I now have space to be thoughtful about that because I’m really in a different mood, I’m really looking now at what does life mean’.

The natural extension is to the people I love whether they’re my direct family members, my parents. Adolescents go through this, let’s not kid ourselves. Teenagers dive in faster than many adults because they’re not so used to the adult framing of ‘it’s all going to get better’. Sometimes they see more clearly.

That moment is really important and it’s also a tough one for caregivers. Because often they’ve gotten into the pattern of ‘don’t worry Dad, we’re going to care for you. This breathing treatment is going to work for you, this medication is going to work for you.’ And of course, they all do until they don’t.

There’s an enormous education that’s needed around that. And a second piece, we’re organized as ‘I need to be the rock’. ‘I need to be the one that’s strong, my family, my spouse, my children, we all need to be strong.’ And, that excludes so many possibilities of support. One of the things in hospice care, we have to help people understand, we are not the devil. We actually are angels that your doctor has sent to your home to be with your. She cares as much about you as she did when you were in your acute treatment process, and she knows that that process would now cause more harm than good. She is caring for you, and inviting us as a team, chaplain, social worker, home health aid, maybe the most important member of the team…how do you do real care, how do you navigate these things and what kind of equipment do you need in your home to make it better? Have you thought about having a hospital bed and putting in the living room, where the view is appealing instead of in a smaller bedroom? So our team is about what’s possible today, in creating an environment today, for you to do your work on what’s next. How do you anticipate that? And if you’re really ok with anticipating dying, then let’s do the life review that’s necessary. Let’s plan a celebration of life. Let’s talk candidly…and this is very important, about what was called advance directives, which you might have done with your spouse al long time ago, but that was something you did, and it exists in some electronic medical record. We know that most of the time that won’t be available in any emergency room you go to, so no matter what you thought your advance directive was, what’s going to happen is, your life is going to be saved, or not, with a lot of activity.

So, we’re going to do something that’s called a Physician’s Order for Life Sustaining Treatment, POLST. It’s a very colorful form…right at the top it says, Box A: do everything Box B, don’t do everything. If you chose box B, then you have other choices. The next category is hydration, no hydration, nourishment, drugs…everything. So, let’s do that. And with your spouse as your surrogate, or your son as your surrogate…or the person who knows your wishes. And perhaps you don’t know your wishes…then let’s have a talk. Let’s get everybody together and talk about your ideal scenario. If you die how would you like that to be? We’re not saying that you’re going to die now…we don’t know where we are in that conversation, but if this is to be your end, let’s talk about what’s important to you. So that everybody that needs to can understand why you’re choosing this box and not that box. And, we’ll have this colorful sheet posted on your refrigerator, or your headboard, wherever it is always available. And we’ll make copies so that your spouse has one, your children have one, so that no matter where you are, at the beach park, in your home, you have identified, and it is legally binding. Advance directives by the way, are not legally binding. The POLST form is legally binding, end of discussion. It’s such a good tool, because it honors the conversation that we need to have if we haven’t had it, or if we’ve had the conversation, it honors what we’ve concluded at this moment. And is completely and easily changeable or revocable.

How do you live this part of your life more fully…?
I would say, it’s a specialty that is always full of possibilities.

Story and photos by Terry Lorant.