Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes
“In their hearts, her daughters just wanted their mother to make the most of the time she had left. She never made it to the beach or hugged her grandchildren. From diagnosis to death, it was two short months. During those weeks, she waited for test results, went back and forth to the hospital to drain her lungs, and was on infusions for a useless Hail Mary treatment, all of which robbed her and her family of precious time to talk about what mattered most. She died in the hospital with her family around her, but everyone had a bad death.”
Althea Halchuck is a patient advocate and founder, Ending Well! Patient Advocacy. She focuses on end-of-life care and planning, aiming to help people have a “good death,” and can be reached at the Final Exit Network and on LinkedIn.
She shares her story and discusses her KevinMD article, “A bad death: the importance of truth-telling at end-of-life.”
Did you enjoy today’s episode?
Rate and review the show so more audiences can find The Podcast by KevinMD.
Subscribe on your favorite podcast app to get notified when a new episode comes out.
Click here to earn 1.0 AMA PRA Category 1 CME for this episode.
Also available in Category 1 CME bundles.
Powered by CMEfy – a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info
Do you know someone who might enjoy this episode? Share this episode with anyone who wants to hear health care stories filled with information, insight, and inspiration.
Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Althea Halchuck. She is a patient advocate, and her KevinMD article is titled “A bad death: the importance of truth-telling at end-of-life.” Althea, welcome to the show.
Althea Halchuck: Thank you very much. It’s a pleasure to be here.
Kevin Pho: We’ll get into the article in a little bit, but first off, can you share your story and journey to where you are today?
Althea Halchuck: Sure. As I said before, I grew up in New England, but I moved to California like 20 years ago, really, and I started volunteering at hospice at that time. It was totally different from what I was doing. In that process, I became a mediator at Superior Court in L.A., and I went to law school to become a better mediator. But while I was there, I had an epiphany that maybe I should be doing some other kind of law. I have an executive juris doctor, which meant that I’m not a lawyer. I didn’t sit for the bar; I couldn’t sit for the bar. But I got a juris doctor in health law, and I did my internship at a pediatric hospice, a local hospice that I was already volunteering at. So I kept moving toward end-of-life issues.
In 2016, I got my thanatology certification, which allowed me to teach death education and work with the terminally ill. I mean, again, I’m moving toward the death realm. I don’t have a problem talking about it with people. And I recently got certified as a facilitator in advance care planning, so I offer workshops in the community to help people. I’ve had clinical ethics training. When I was in California, I was on two hospital ethics committees, and I learned a lot doing that. And again, as a professional mediator, I now help mediate elder and senior end-of-life issues with clinicians who, you know, may be having a problem coming to some kind of decision and need a neutral third party.
I started my business, Ending Well! Patient Advocacy, in 2020, at the start of the pandemic, which wasn’t a bad thing to do, because most of my work is research and education, and I could do that from home. And I contracted with the Final Exit Network in 2021 to become, it’s called, a surrogate consultant. What I do is help people who are having a problem in, say, an ICU, where their wishes are not being followed or the surrogate is not being listened to, and I can give them their legal options. I don’t give them really anything other than advice on what to say and who to talk to, but it’s like another person who can help. I can also go on a Zoom call with their provider, and we can have a conversation about what the treatment options are and what the pluses and minuses are. So that’s what I do for them.
Plus, they’ve made me a national speaker. I’m going to a conference in Atlanta to talk about Final Exit’s guide to peace at the end of life. So it’s opened up all of these avenues for me, and working with them was supposed to be part-time, but it’s more of a full-time job. So all of the things that I’ve done in the past, like most people, fall under this umbrella of my business.
Real physician voices, twice a week
Free, and one click to unsubscribe.
Kevin Pho: So you mentioned your work as a mediator in end-of-life care. Tell me, what are some of the common or typical issues that you deal with that require mediation?
Althea Halchuck: If somebody, say, is at the end of life, and they’re incapacitated, and they don’t have an advance directive, then family members come in, and they all have a different idea of what should be done. So that’s one issue. Family disputes are one of the biggest problems in an ICU. People just don’t get along for whatever reason, and now they’re under all the stress and pressure. And really, in that kind of thing, you need somebody in the room who is objective and can help the parties see where their common areas are. Mostly, the common area is to do what’s best for the patient.
And sometimes it’s a provider issue, where they want something, like a feeding tube, that the patient or the family says no to, they should never want that, like, “No, we’re not going to do that.” So then they have an impasse, and again, I can help, come in, and offer suggestions: Maybe they want to try this or not try this. Or what did the patient want? What really were her end-of-life goals? And we can go from there. So it’s those kinds of disputes. People are never at their best when someone’s in an ICU, and really, it’s trying to bring calm and peace into the room.
Kevin Pho: Now, not everyone in end-of-life situations that I’ve been involved with has a mediator like yourself helping facilitate that conversation. How does one know whether to engage a mediator like yourself when it comes to difficult end-of-life decisions?
Althea Halchuck: Well, I’m more of a counselor and a conciliator than I am a mediator in those situations, because these people have to deal with each other after the patient is gone, in ordinary life. Sometimes it’s early on, say, in a diagnosis, and so they have to deal with the same doctor all the time. And really, if you’re at a point where a decision isn’t made and people are being pressured to make it because time is of the essence, a lot of times, most of the time: Is this person going to go into hospice, or is this person going to continue treatment? That’s a big fork in the road. So if you’re at that fork and you can’t figure out what to do, and people are coming up with all different kinds of opinions, that may be a time to call someone in.
Again, it’s more conciliation. I did a presentation about this. It’s trying to bring people together in a consensus; mediation is really not that. So if they can have a consensus about what to do, maybe try something for a while, and if that doesn’t work, we give it a certain amount of time. So I’m all about options and thinking outside the box, and really having people come together at the end, so that the person in the bed isn’t surrounded by stress and discord. You want the person in the bed who’s dying to have the most peaceful ending that they can have, and if people are fighting, that’s not going to happen.
Kevin Pho: All right. And you talk more about end-of-life issues in your KevinMD article. It’s titled “A bad death: the importance of truth-telling at end-of-life.” Now, for those who do get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?
Althea Halchuck: Sure. I write a lot, and I write a lot of blogs, and sometimes a blog will just write itself. The person in this article is my sister-in-law, was my sister-in-law. I learned about her health issues at the end of January, and through the next month, I contacted my adult nieces, who I’m very close to, and they told me that she was having all this testing. After the test, she was diagnosed with stage 4 cancer in both lungs, and it had metastasized to her liver and bones. Someone on their health care team suggested it was terminal, that’s what they were told, and suggested hospice. And then the next thing I know, she’s meeting with her oncologist. I’ve been in this business long enough to know that when that happens, you know, there goes palliative care and hospice.
So they told me he was treating her, and, you know, I didn’t want to push, but I’d send them little articles on when it’s time to switch to hospice. I knew she was really struggling and suffering, and she kept having to go to the hospital to have her lungs drained. She couldn’t breathe. That’s why she went to them in the first place: She couldn’t breathe.
So he told her, and now this is a quote from my nieces, he told her, with them in the room, that he had gotten other patients through this with this miracle drug, and he could do the same thing for her. And he said that even though she wasn’t eating and she was sick, in 6 to 8 weeks she should be feeling better and should be almost her old self again. So the next thing I know, she’s gone.
At the wake and the funeral, I got all the details. My nieces thought she should have been on hospice immediately, but they couldn’t really tell their mother that. They also told me that their mother really loved this doctor. She trusted him; anything he said, she was going to believe. And that’s what he said: 6 to 8 weeks. She kept being hospitalized, and finally, the last admission was actually in New Hampshire, a small rural hospital. The ER docs took one look at her and said her death was imminent and that she should be on hospice, and she died a day and a half later in the hospital, on hospice.
[Remark removed by the editor.] He told her that she could get through this. The two things she wanted to do were to go to the beach one last time, because she loved the beach, and to hug her grandchild. She had just had a grandchild 10 days before her diagnosis, and she never even got to meet that grandchild. So he took that away from her, and they were mad about it. So again, everybody had a bad death, my sister-in-law included, and they’re going to have to live with that the rest of their lives. Thus the blog.
Kevin Pho: Now, obviously you can’t speak for that physician, but in your opinion, why do you think that particular oncologist took that approach?
Althea Halchuck: I think, as it happens, it starts really in medical school. A lot of times, doctors, you know, they cannot fail. Death is failure to them, rather than a part of life. So they have these great treatments that they think are going to extend life, but what they fail to see is that by extending her life, she missed out on precious time that she could have had with her family, you know, tying up loose ends, hugging her grandkids, going to the beach. She didn’t get any of that because this doctor didn’t want to fail, and death is failure. So I think a lot of oncologists think that.
I recently saw a webinar with an oncologist who was in Scottsdale. This was a national webinar through ADEC, which is the certification for thanatology, and he was wonderful. He talked about that, like why, when it’s time to stop, when it’s time to just look at the patient and do what’s best for the patient, not what’s best in your bag of tricks that you think is going to help. I mean, she just trusted him, and that’s the sad part. I wanted to send this article to that oncologist and just let him know, because I don’t think he knew about any of the aftereffects of what this drug did. She was sick the whole time. She never got any better. She never got a chance to have a good death.
Kevin Pho: Now, as far as you know, did the oncologist have advance directives or end-of-life wishes conversations with your sister-in-law?
Althea Halchuck: That’s a good question. When I first learned she was ill and hospitalized, it didn’t look good; there was really something serious going on. I was in New England at the time, and I offered to go see her and do an advance directive. Her daughters didn’t think she had one, but they said their father was her surrogate or proxy in Massachusetts, and that he knew what she wanted, and certainly dying the way she did is not what she wanted. So I don’t know what conversations he had with her. I don’t think they know. They wouldn’t; you know, they’re both young mothers with jobs, so they weren’t in the room all of the time. They just told me what they saw when they were in the room.
Kevin Pho: Now, if this scenario were to replay again, what would be a more ideal approach this oncologist could have taken?
Althea Halchuck: Well, certainly what you just said: What are your end-of-life goals? What do you want to do? And I think what it came down to, really, is the prognosis. I don’t think that was clear to her. I don’t think, if he’d have said to her, “I’m really sorry,” you know, he didn’t cause it, “you have cancer,” just exactly what I said, “it’s everywhere.” He did tell her that. But I don’t think he said, “And you really only have a month left, or two months left, or three at the outside, if we do nothing. If we give you this magic potion, you may have three months and five days more, but you’ll be sick the whole time, and you will have no quality of life.”
If he’d have said it that way, I think she would have said, “You know, hospice, that’s for me. I really want to spend the time.” She had moved out of her house because my brother couldn’t care for her at home, so she was in an assisted living that she liked. She was only there for a couple of months, but she could have gone there, and her grandchild, her kids, could have come. She could have had so much better an ending if she had known. I mean, he didn’t have a crystal ball, but he knew: How much time was she really going to get with this drug? Not much.
Kevin Pho: We’re talking to Althea Halchuck. She is a patient advocate. Her KevinMD article is titled “A bad death: the importance of truth-telling at end-of-life.” Althea, for those clinicians listening to this podcast, what are some lessons? And I know you’ve mentioned this earlier, but what are some specific lessons that they can take away from your story?
Althea Halchuck: I think one thing I do want to mention is what surprised me and how it relates to clinicians. I had 4,000 shares of that article. I’ve written other articles on KevinMD where I maybe had 100 or 25, I mean, and that’s OK, but 4,000 in probably two weeks. And I had so many people email me, on LinkedIn, on Facebook, about how they experienced the same thing, and not just family members: nurses in ICUs, oncology people who deal with this day in and day out. So I heard about one bad death after another.
I think if clinicians would just tell the honest truth about the prognosis, about a timeline. Nobody’s asking for an exact timeline, but I think they really want to know: Do I have a month, doc? Am I going to see the next Christmas? I mean, that kind of thing. I think they can do a prognosis within some sort of time frame. And don’t offer treatment options that are going to make the patient sicker, that don’t have a prayer of working, or that are a poor trade-off just to gain a week or a month. Really let the patient know what they’re up against, and be honest about it.
Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?
Althea Halchuck: Utilize palliative care and hospice sooner rather than later. It’s so underutilized. It’s pretty much free under Medicare, and I think people will just have a better-quality end of life. It gives them that precious time where everything’s on the table. They can have last conversations. They can ask forgiveness; they can forgive other people. Janet never got to do any of those things. And I think if people were referred to hospice and palliative care and had that kind of experience, patients and families would definitely experience a better death.
Kevin Pho: Thank you so much for sharing your story, time, and insight, and thanks again for being on the show.
Althea Halchuck: Thank you, Kevin. It’s been a pleasure.
Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes
