Dorothy: [00:00:00] Today our guest, David Holmes, tells us the rest of the story he shares, highlights from his wife’s life, her understanding of what was happening, and he also gives us a very personal look at what was happening in his own life at the same time. To say that Heather was much loved by friends around the world, and David’s final gift to her is actually sharing how this couple balanced reality with hope, even during the most challenging moments.
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David, thank you so much for doing a repeat performance for us. I know that, uh, when we talked to you before, we talked a lot about your wife, Heather, her diagnosis with breast cancer and how so many things about her, uh, diagnosis were it was different and she was a young woman. And just to recap, you and Heather moved to the US from the Uk and it’s a very different environment for healthcare.
David: Yes, that’s right.
Dorothy: So today we’re gonna focus on what the difference is and I think that your experience having been in both worlds and knowing what it was like, plus Heather being a palliative nurse with a career in in that kind of care, I just was astounded [00:02:00] at some of the things that you recognized within our healthcare system that are different.
So we’re gonna do a bit of a recap with what was going on with Heather, but today I really want you to focus on what is the difference between palliative care and hospice as you understand it from that UK- -US perspective?
David: Sure. Um, and I, I should say, I, I don’t claim to be a professional expert, but having lived with somebody for 23 years who absolutely was, uh, uh, a leading authority on, uh, palliative and end of life care in the uk, I certainly had the opportunity to observe and understand, uh, a lot of the differences and you have to start with the different healthcare systems between the UK and the US. Uh, UK has a public funded healthcare system, which is delivered free at the point of [00:03:00] delivery, prioritized based on need. It’s very different to the US systems. And both systems have strengths and weaknesses, but some interesting statistics that people might not realize is the US federal budget for healthcare per capita is about the same as the, uh, UK budget per capita for government funded healthcare.
And, and just the profits from the US healthcare industry are about the same as the entire, uh, UK National Health Surface budget. Now, obviously that’s for.
Dorothy: Oh my goodness.
David: That’s for five times more people, but it gives you some interesting context. Now, just this morning, the UK Chancellor of the Jeca, uh, did a budget and set out some of the objectives for the UK Health Service. One of those, which, which might be shocking to, uh, Americans who have good health insurances is the UK government has set an aspiration to get waiting lists down to 18 weeks. And in America, if you have good health insurance, an 18 week [00:04:00] waiting list is, is unimaginable.
Dorothy: Mm-hmm.
David: Now. In America, if you have great health insurance, then you have access to some of the best hospitals, the finest doctors and nurses, and some of the best care in the world. But when we come to the differences, when we think about palliative and end of life care or hospice care, there really are some profound differences that are kind of baked into the, the way that, uh, that healthcare is delivered in America. And let’s start with where palliative care and hospice care become relevant to a patient.
In the uk palliative care, which is really defined as non-curative treatment is incorporated into, uh, care for people with acute or, uh, really serious diseases or prognosis from a very early stage, you know, palliative care used to in the UK a couple of few decades ago, palliative care was really [00:05:00] bad news.
If you met the palliative care nurse, that things meant things were really bad. Whereas in the UK there’s been a change to say actually, as people are going through not just a cancer journey, although that’s, that’s the majority of cases. We need to think holistically about the patient’s care, not just about the curative treatment that we’re gonna give them to treat the disease, but we need to think about their spiritual wellbeing, their nutrition, their fitness and wellbeing.
Think holistically about the best way to treat a patient so that they can have the best outcomes. Now obviously as somebody goes through a long, complex cancer journey, um, the role of palliative care becomes more important and palliative care becomes something where as curative treatment options are reduced, diminished, or take a, a lower role and perhaps focused on more life extending care or extending quality of life care, palliative care can become [00:06:00] a much more important part of the treatment.
But it’s thought of as a continuum. Um, you know, in, in the uk multidisciplinary teamwork is a sort of foundational approach to how, uh, patients are treated. You know, in the same way that in the US you might have meetings between, uh, uh, oncologists and radiologists. Um, in the UK you might have a broader set, set of team.
You might have social workers included in the discussion for how to optimize a, a patient’s holistic care. In the US it feels like, um, there’s a much more segmented approach to how healthcare is delivered.
Dorothy: Mm-hmm.
David: So you have curative treatment and palliative care is not part of that. When curative treatment is coming to an end, um, then your oncologist might say, well, it’s, it’s time for you to, uh, to have palliative care. And so [00:07:00] there’s a, there’s a, there’s a transition now with some overlap. It is certainly possible. And, and, and Heather did have, uh, life extending chemotherapy.
Dorothy: Mm-hmm.
David: Uh, while she was having palliative care. But certainly it felt like a transition. Palliative care is something that comes when the prognosis essentially becomes, uh, a terminal prognosis. Now when it comes to hospice care or end of life care, I think in the uk, because palliative care has been a part of the journey, it really is more of a transition in that the focus becomes around how you can give people the best quality of life. And again, it’s understanding important things like helping patients have the conversations they want to have with their family. Understanding things like where they want to die, thinking about any personal financial arrangements they might want to make, understanding how they [00:08:00] want to be treated in their final, uh, months, weeks, or, or days of, of their life. You know, how aggressively they want to have pain medication. So, that transition from kind of palliative care to hospice or end of life care is again, kind of quite, quite different between the US and the uh, and the uk. And if I can talk perhaps about Heather’s experience, we found that we were at a point where the oncologist said, well. Now might be the time to consider hospice care, but that didn’t really mean anything to us because our experience in the UK was very much, well, again, it’s part of the continuum.
Dorothy: Right.
David: And so this idea of a transition was not really well understood. But nonetheless, we thought, well, you know, things are progressing. We. We dunno how much time we have, but it might not be a lot of time. And so we [00:09:00] had a, uh, a hospice provider come round to our house. And I have to tell you, it was a, it was a difficult experience.
I mean, first of all, I think the, I. The person who came round was a relatively new and inexperienced representative of this hospice provider, and I certainly don’t think was expecting somebody who was a tenured professional in hospice and end of life care. And the first thing she did when she turned up is she gave us her business card, which said Business development liaison. And I was blown away by that. I have no idea how any hospice company could think business development is a good job title to give to somebody.
Dorothy: Absolutely.
David: Who’s looking to, to sign up, uh, new patients. Um, but they, they essentially sat down. And what you realize is, is that in the US the transition to hospice care has a lot of consequences. Because in order to [00:10:00] take hospice care, you have to stop any curative treatment.
Dorothy: Mm-hmm.
David: And hospice providers are very focused on what’s called comfort care. Now, the business development liaison we spoke to said something, which struck me as very odd, which was we medicate very aggressively as a matter of policy. And I thought, well, that’s very strange because what I’d like to hear is we medicate appropriately, and in some cases that can be quite aggressive ’cause we’re focused on ensuring patients are comfortable. But this idea of aggressive medication as a standard policy didn’t feel like it was supporting patients to enjoy their remaining time and give them the best quality of life. Now, at the point that we realized that in order for Heather to access hospice care, we’d have to give up any chemotherapy or any drug treatments. [00:11:00] Um, and there’s even some debate about, well, can you have antibiotics? Could you have steroids? What counts as life extending or curative treatment, which is generally not allowed under hospice care.
You know, could you, for example, go to the ER? What if she fell and broke a wrist. Could we go to the ER? And the store is a bit confused, and again, I don’t pretend to be an expert. I’m sure there are people screaming, saying, no, that’s not quite right. But the, the explanation we were given is, well, you can go to the ER, but you’d have to come out of hospice care and then you can go back into hospice care in the future.
So again, it’s a very strange environment. Now. In Heather’s situation, it was a little bit different. Heather found herself in hospital. She had a, um, she had some complications related to, uh, a tumor in her chest, and, and she was in hospital for a couple of weeks and, and she [00:12:00] deteriorated very quickly, overnight, to a point where on the Monday morning she was visited by the surgical team. They said she’s doing great. But by the Monday evening, um, it became very clear, um, that she didn’t have very long at all. And so overnight I went home. I got the kids they wanted to be, to be with her. Um, and um, early the following morning, I spoke to the palliative care doctor who said, I’ve put in a request for Heather to be transferred to hospice care.
Dorothy: And in your mind this was an actual transfer, transfer?
David: Well, it was confusing.
Dorothy: Mm-hmm.
David: Because Heather’s in hospital, and so this, a representative came along from the, from the hospice that we’d previously spoken to with a whole bunch of paperwork to complete. Um, but it was Medicare paperwork. And I said, well, [00:13:00] we don’t have Medicare. And she said, oh, well I’ll, I’ll need to go and speak to the office. And she came back and said, no, I’m sorry. If you’re not on, if you’re not on Medicare, then you’ll have to do this out of network and…
Dorothy: Out of network.
David: Yeah, and if anybody’s heard, heard those words before and been through this, you’ll know that they’re the scariest words that you can possibly hear.
Dorothy: Yeah. Yes.
David: Out of network is a potentially unlimited liability.
Dorothy: Mm-hmm.
David: For you to pay expenses and those expenses can wrap up into the tens, hundreds of thousands of dollars really quickly over the years, I’d had a number of so-called out of network bills for tens of thousands of dollars, each of which I’d fought and overcome. But it’s a scary process.
Dorothy: Right.
David: So I said, well, no, we’ll have to find a hospice provider that accepts my insurance. And she said, look, we probably won’t chase you for the money because it’s hospice care. And I’m like, nobody wants to be in a situation where they’re trying to organize the best care for [00:14:00] their dying wife, and they’re being told it’s out of network, but we probably won’t harass you for it. So. We found ’em.
Dorothy: So you’re now trying to find a hospice provider—
David: —now trying to find another hospice provider—
Dorothy: —insurance.
David: So another hospice provider comes along and came to the hospital. They did accept my insurance, so we did a whole bunch of paperwork and, and some of it was just very confusing, so I had to sign an out of hospital DNR on Heather’s behalf, and I was like, we’re in the hospital though, and they’re like, look, you have to sign this paperwork. It’s required. If you don’t do it, then um, we, we, we can’t treat your wife. And at this point, Heather’s quite uncomfortable because during this transitional process of going from hospital care to hospice care, we, she can’t be treated, she can’t be given drugs, and so she’s quite uncomfortable at this point. [00:15:00] She’s not conscious, but it’s obvious that she’s in some considerable discomfort. So I’m signing these endless forms to, uh, help make this, um, this transition happen. And it ended up taking, I wanna say overall it was about seven or eight hours that it took to complete the process.
And the insane thing about it was that Heather was discharged from the hospital. They cut off her wristband. They put a new wristband on her. They readmitted her to the hospital. Now, to be clear, she stayed in the same bed. The nurses were the same, the room was the same, the doctors were the same, but there was this eight hour pause while she was unable to be treated. Now retrospectively, it seems that that was completely unnecessary.
Dorothy: Mm-hmm.
David: And so the one thing I’d say to anybody listening to this who finds themself in the same situation is, you know, hospice can be an incredibly important part of care, and especially [00:16:00] end of life care. And it’s not straightforward to understand when the right time is to make that transition, but if you feel like you could be going in that direction, talk to a couple of different hospice providers. Make sure they’ll take your insurance and make sure you understand their approach and their policies, and make sure you are comfortable with how that company, uh, approaches things.
Because once you’ve made that transition to hospice care, you know, we come back to this question of, um, of what’s allowed and what’s not allowed, and this is driven by the policy of the hospice provider. So, for example, you know, Heather was having difficulty breathing, so she put on a machine called a high flow nasal cannula.
It basically provides a lot of oxygen to support your breathing. Now, um, as soon as she’s transitioned onto hospice care, they said, oh, well she has to come on that she’s not allowed to be [00:17:00] on this device, which is helping her breathe because now she’s in hospice care, we can give her regular oxygen, but it has to be at a, at a much lower level. And and it’s, it’s incredibly difficult, and this was the point at which I felt like, you know, the last 20 years of being married to a palliative and end of life specialist should have prepared me for this moment and helped me. But in the moment, you’re completely traumatized by this reality that this person who you care about incredibly deeply is dying. That’s a reality.
Dorothy: Mm-hmm.
David: You don’t want them to die.
Dorothy: No.
David: You also don’t want ’em to suffer. And so understanding the choices that are being made so the, in their final hours somebody can have comfort and dignity. And I think a lot of the choices that are made, uh, are maybe appropriate, [00:18:00] but it’s incredibly difficult to see somebody you care about have interventions, which you, you know, are, are going to fall, shorten their life.
Dorothy: I cannot imagine a person who’s watching someone they love die, as you’re describing. It’s almost like if we, if you had tried to explore hospice after a year of her diagnosis, or two years or whenever, it’s almost like you’re giving up. I mean, I, I think that would be very hard for anyone to do. It would be, well, it’s not just an option. I mean, hospice is a final decision and I, I know that a lot of our, our listeners have had to deal with that.
David: Yes. And, and I should add that in, in Heather’s case, she was on hospice care, uh, in the end for about 11 hours.
Dorothy: Yeah.
David: Many people, uh, have hospice care delivered for months.
Dorothy: Mm-hmm.
David: [00:19:00] Occasionally years, although that’s, that’s rare. And a lot of hospice care is provided in a home setting.
Dorothy: Right.
David: And it can be incredibly important because you know, caring somebody for somebody with a terminal disease, you know, Heather had a lot of difficulty walking in her last few months. There’s a lot of, you know, uh, personal care related things that, you know, are, are not straightforward to take care of. So having that, that home support, having a nurse come to your home and being able to help you, I can see how that can be incredibly valuable. But you are right. There is an element by which you know, hospice care certainly does feel like giving up, and perhaps that’s why we, we, we certainly pushed it off until the, the last moment, but I think that was really a reflection of how frustrated Heather felt with how hospice care was, was being delivered. And she was a very active part of that discussion around, you know, should we be [00:20:00] transitioning to hospice care? But it felt so, so difficult. And what’s interesting, every hospice provider I’ve seen will tell you that, you know, hospice care doesn’t mean this is the end.
Dorothy: Mm-hmm.
David: Um, but equally, the choices that you’re required to make in order to access it, certainly feel like you are shirt shutting off certain avenues that might extend your life. And Heather was an absolute fighter. Now, she didn’t want to live beyond the point at which she couldn’t enjoy any quality of life.
Dorothy: Right.
David: But she absolutely wanted to live as long as she could enjoy her days and pursue every option that was available to her.
Dorothy: And of course you had two children, teenagers.
David: Yeah.
Dorothy: Tell us their age again.
David: Um, today they’re, uh, 18 and 16.
Dorothy: And at the time they were what?
David: Well, at the time they were 18 and six— the time Heather died, they were 18 and 16 as well.
Dorothy: And I remember [00:21:00] you saying that the graduation of one was just around the corner.
David: That, that’s right. So Alex’s 16th birthday was on, uh, March the 10th, which was two days before Heather died. And so, you know, to this point about quality of life, you know, just a couple of days before Heather died, she was able to give Alex’s birthday presents and his birthday card, and we were able to share time together, which. I, you just couldn’t possibly put a price on that.
Dorothy: No.
David: And then Jessica graduated in May this year, which is something Heather desperately wanted to be there for.
Dorothy: Mm-hmm.
David: But, but just wasn’t able to.
Dorothy: So there’s so many extenuating factors about her wanting to hang on, her, wanting to be around these, these milestones for the children were incredibly important for her.
David: Yes, that’s absolutely right. And in fact, you know, um, you know, four days before she passed, um, she chose to have a quite [00:22:00] major surgery, which was, you know, which was an incredibly difficult choice. But the, the surgeon was very optimistic that it could give her an extra couple of months. Um, so she chose to pursue this, uh, this surgical option, you know, in the hope that that would give her some additional times in, as it, as it turned out, she, it wasn’t strong enough to endure and recover from it.
Dorothy: Right.
David: But that was, that was the level of her commitment to, you know, to her kids and her family.
Dorothy: And like you said, this may not be the normal experience, but for you it was, it was a very difficult time and, and, and I can, as you’re piecing this together for us, because we weren’t there, you know, I’m starting to see, yes. You had all this hope for her being around a few more months and then she went downhill. So now you’re faced with someone walking into the [00:23:00] hospital room and saying to you, we don’t have a funeral home on file.
David: It was one of the most bizarre moments of the of, of, of many bizarre moments. But you, you’re, you’re exactly right. Electronic medical record systems in, in this country are a, a surreal thing. They’re, they’re, they’re a curse and a blessing in almost equal measure. Um, but you know, one of the things that popped up on their system was they, they, they didn’t have a funeral home. And so, you know, on the, the, the afternoon of Heather’s last day, uh, a nurse popped in and said, oh, we don’t have details of your funeral home.
And I said, well, honestly, we weren’t expecting to be here. And so we, I, I don’t have one picked out. And she said, we’d really rather prefer that you, you did have one selected, because then we can call them, uh, as soon as your wife passes. I was like, don’t you have a morgue? And she’s like, we do, but we, we prefer it if, um, if the, the, the body can come and be collected.
[00:24:00] So I had this very surreal moment where I’m sat holding Heather’s hand as she’s laying few hours away from death and in, in my left hand on Googling for funeral homes, looking at, uh, uh, at somewhere. And it was, uh, it was a very strange experience. So my advice to anybody is this is one of those things that, that we put off forever and, and I wish it’s something that we’d taken care of years earlier.
Dorothy: Yeah. But still. I mean, you know, like you said, she was a fighter and we all want that person to live.
David: Yeah.
Dorothy: That’s, that’s the dilemma here with, with any terminal diagnosis. There’s, there’s no one that’s gonna say, here’s the date you’re gonna go, so you need to have this and this, and this, and this done.
David: Yeah.
Dorothy: It’s always, you know, well, there may be more we can do. And of course, in her case, there was, so, I, I [00:25:00] just hate that you’ve had this experience, but I also, I, I, and I say this from my heart of hearts, I think this is so courageous that you’ve come and shared it with us.
David: Yeah.
Dorothy: Because people will experience this.
David: Yeah.
Dorothy: And they, they need to know it can happen.
David: Yeah. And things like this kind of catch you out a little bit because I, I certainly found, you know, funeral homes in, in a, in America and not the easiest companies to, to deal with. I had a, an experience of a couple of them, but at a time when you are grieving is pretty hard to be taken into a room and given the PowerPoint presentation for the bronze premium plus package with this, that, and the other.
Dorothy: Mm-hmm.
David: Um, and, and we certainly found that process was very difficult and, and in the end, and this is why we ended up making our own arrangements to celebrate Heather’s life, [00:26:00] which I think in the end worked out very well for us.
Dorothy: Oh, very well. What did you tell us? A thousand people all around the world took part of this.
David: It was just, it wasn’t, it wasn’t quite, it wasn’t quite a thousand. But we, you know, one of the, one of the things that was important to me, obviously coming from the uk we were trying to work out whether we do multiple events in different locations.
And I talked to the children, we realized that actually this is one of those events that you really want to do once, um because there’s a sense of, ,um uh, you know, kind of completion with, with, with having this event, the idea of doing it in Houston and then flying to the UK and doing something there would just be kind of hanging over us.
So we essentially, we, we did it in, um, uh, in Houston. Um, but we found this amazing church that was able to live stream the whole event. So we had groups of people getting together in Guilford, where we lived, uh, in Spalding Lincolnshire where, where Heather was [00:27:00] born, and then up in Edinburgh, Scotland, where I lived. And then we had other people dialing in from Norway, from the Netherlands, from France, from California, from New York, from really all over the world.
Dorothy: Do you think it was good that the children were a part of all this, helping you to make those decisions?
David: Absolutely. I mean, it would, it was, it was critical and I realized a couple of things. You know, one is, you know, that service arguably was slightly self-indulgent. But really the people I cared about were, you know, the kids and whether it was something that they would recognize and participate in. So we, the three of us spent a lot of time together. We didn’t invite many other people into the circle of planning for this event.
Um, we, you know, we had some help with the organization. We had friends who, you know, recorded those amazing videos. Um, but we kind of put the thing [00:28:00] together. And really in the last week as it was coming together, you know, Jess and Alex said, look, we, they both wanted to be part of, you know, introducing this.
We didn’t have, we couldn’t think of somebody who could lead the service. Who could take everyone one through it, somebody who was relevant and appropriate to the family. So we decided to do it ourselves. So I did the introduction and then Jessica introduced the first speaker. Alex introduced the second one, and it was an amazing experience and, and, uh, I think the, the, one of the best points for me was watching how Jess and Alex supported each other through that whole process. It made it something that, that kind of, we’d put together, um, as a, as a tribute to Heather. And, and for me it was, uh, it was, uh, it was perfect.
Dorothy: Such a loving gift. Such a, like you said, tribute. My goodness. [00:29:00] Well, David, you’ve just been so amazingly open and candid and I can’t tell you how much we appreciate you being here, sharing Heather’s story, sharing your own story, and helping us to understand there’s some things, no matter who you are, you’re gonna have to take care of because right at the last minute, it’s just, it’s like you said, none of us wanna do it.
David: Yeah.
Dorothy: Thank you for being here.
David: Thank you so much. It’s been a real honor to talk to you.
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