The Comfort Kit

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0:30Fetch Pet Insurance. Every six seconds, a pet owner in the U.S. gets hit with a vet bill over$1 ,000. Fetch can help. Fetch is the most complete pet insurance for dogs and cats, according to consumeradvocate.org. You get paid back up to 90 % of vet bills at any vet in the U.S. and Canada, with claims paid back in as little as two days. Go to fetchpet.com slash save right now for your free quote. That's fetchpet.com slash save. My mom had been found doubled over and non-responsive, and when they put the oxygen monitor on her finger, her oxygen saturation was in the 70s, which, if you're in the medical field, a sustained oxygen saturation in the 70s is not compatible with life.

1:20In fact, it's not very long until someone is brain dead. This is Rachel Waters. In July of 2023, she got a phone call from the memory care unit at an assisted living facility where her 74-year-old mother, Marsha, lived. Marsha had advanced Alzheimer's and cancer that had stopped responding to treatment and had been on hospice care for the past seven months. Rachel says when staff from the facility found Marsha nonresponsive, they'd gotten in touch with a hospice nurse. And when he got there and examined her, he declared that she was actively dying. My mom did have a DNR. A do not resuscitate order.

2:03So she did not want any resuscitation. And so in the absence of resuscitation, he determined that she was eminently dying and had hours to days to live. And so the staff called me and they got him on the line too because he was there. And they said, you need to get down here immediately because your mom may not be alive for you even to make it from New York. Rachel lives in Queens. The care facility was in Georgia, not far from her hometown. Rachel had been traveling to Georgia once a month to be with her mother and had known it was possible she might receive a call like this. When someone is on hospice care, it usually means they have six months or less to live.

2:51And they receive care that focuses on comfort instead of treatment. Rachel and her partner David quickly looked up flights. Unfortunately, there was a really catastrophic storm with massive flooding that had grounded all flights leaving New York. We had three flights in a row canceled. So we had to take an Amtrak the next morning to D.C. and then fly to Augusta. And the whole time I'm texting the nurse, like, is she still alive? Is she still there? Even though she was not responsive, she was still hanging on. And by the time I got there, you know, it had been more than a day, non-responsive, no food, no fluids.

3:34She'd been put on oxygen. That brought her oxygen saturation up. But she never regained consciousness and basically looked paralyzed when we arrived. She couldn't move. And it was clear she was in the active dying process. So we set up a bed in her room and waited. Did she seem comfortable? No, she did not. She had two large bedsores, it appeared. and the only responsiveness she had was when staff came to turn her. Her face would just distort in agony, looked like a Greek theater mask. And it was clear to my husband and I that she was in an immense amount of pain when she was turned. And sometimes she would try and make an utterance.

4:21But her eyes were unfocused and glassy. They were starting to dry out because she'd had no fluids. It was really clear that whatever dying process she was going through was not comfortable. Rachel asked the care facility staff if they could give her mother something for the pain. Most of the people who worked there were aides, not doctors or nurses. It wasn't a medical facility. So Rachel asked if they had what's called a comfort kit, something that's often given to caregivers when someone enters hospice care. It can include medications like morphine and the razepam that help manage pain, anxiety, and other end-of-life symptoms like shortness of breath.

5:04And they unfortunately did not have a comfort kit on hand. And so I jumped into action requesting that hospice get one prescribed ASAP. The care facility consulted hospice nurses they worked with. And they were like, well, we don't think she needs it. And they were like, she's comfortable. And I was like, she has bone cancer and bed sores, and she's clearly in pain. She's not comfortable, and she is entitled to comfort care under law. According to Georgia state law, hospice services must ensure that patients and their families receive palliative care for persons with advanced and progressive diseases when offered.

5:47in a manner that respects and protects their dignity and ensures all patients' rights to receive care that neither physically or emotionally abuses the patient nor neglects the patient's needs. Rachel says the hospice staff didn't explain why they believed her mother was comfortable and didn't need the comfort kit. Which was the source of conflict, right? Because we and my friend Allison, who was also a hospice nurse, was coming in and examining her. And she was like, I don't know why they're declining to prescribe this. This is very unusual. This is not the standard of care. The care facility wrote in their logs that they consulted a family doctor who said she, quote, will not start morphine at this point.

6:38And the logs noted that a hospice nurse, quote, doesn't see any reason to start resident on morphine. And it seemed like when Rachel talked about morphine, it made this nurse really uncomfortable. Rachel's partner, David, remembers feeling confused about the nurse's reaction. She's at end of life, and hospice's whole entire purpose is to ease people's pain as they pass. I mean, it must have been an emotional time. I mean, you're both watching Marsha clearly in pain and dying and then trying to speak with these nurses or speak with the workers at the facility. I mean, what were those conversations like?

7:23I can imagine it was probably not heated, but, you know, you were trying to advocate for someone who's on pain. Yeah, I mean, we were advocating. Rachel was very direct, but she wasn't being agitated or anything. It was a very calm, like, direct, like, oh, this is what she needs. And it was just kind of frustrating because they were not listening to her. And there wasn't any heated argument. It just seemed like this person had already made up their mind about what Rachel's mom needed. Rachel remembered that there was a comfort kit with morphine at Marsha's house, which was about a 30-minute drive away.

8:02Marsha had stayed in her own home for the first few months of hospice care. And Rachel had been given a comfort kit then, along with instructions. The nurse who came to the house for weekly visits at the time explained, you know, this is what these medications are for, especially if she begins to experience pain or respiratory distress during the dying process. Here's the emergency hotline number. This is what you call if you start to see these symptoms. And we can walk you through the administration of these medications. but you'll essentially be expected to administer them at home, especially in the event if your loved one can't administer themselves.

8:39And it's generally assumed that your loved one can't if they're actively dying. When Marsha was moved to the memory care facility, Rachel says she was told it was fine to hold on to the comfort kit. David drove to Marsha's house to retrieve it. And so I just picked it up and put it in the car because we knew the care facility did not have anything on hand, And in the evening, it was almost like skeletal personnel. There was a receptionist and maybe some orderlies, no medical professionals. I knew there was a nurse on call. But in the evening, when we were there by ourselves, we knew we were kind of on our own.

9:18And so we just wanted to be prepared. That night, Rachel and David set up an air mattress on the floor of Marsha's room. Very early the next morning, around 4 a.m., a noise woke them up. And that was my mom fighting for air. And I knew from a booklet that actually my hospice nurse friend, Allison, had given me about what to expect at the end, the explanation of agonal breathing. And this mandibular breathing where they sort of just thrust their and smash their teeth together in an effort to kind of gulp or swallow air, that is a sign of impending death. It usually happens anywhere from three or four hours to 20 minutes before death.

10:05It looked distressful to see. Like, it really distressed Rachel to watch her mom in that state gasping for breath. It's like watching a fish out of water, trying to breathe. And we knew that the comfort kit literally says on the bottle, the morphine bottle says, for shortness of breath. Rachel remembers wanting to check one last time to see if the care facility would order a prescription. Which would enable the workers at the facility to administer the medications, right? We did not want the responsibility for that because it is an utterly nerve-wracking thing already to watch your parent die, much less be responsible for their comfort care.

10:49Um, so at that point, seeing my mom in this desperate agony, hungering for air, I ran all the way to the front desk and said, please, please tell me that comfort kit prescription has come through with morphine because my mom needs it now. They went and checked and said nothing had come through. And at that point, my husband's like, I can get it from the car and we can call the hospice hotline and see what we can do. And so that's exactly what happened is he went and he got the kit from the car. And I called the emergency hotline and I explained her symptoms to the woman who was on the line. And one of the things I asked, I said, even though she's in memory care, is it legal for me to give her medication here?

11:38And she said, well, yes, of course, that's why we prescribed the comfort kit to the family. Like, that's what this is for. David says while Rachel was on the phone with the hospice hotline, some of the aides came into Marsha's room. David remembers Rachel told them that the hospice hotline had told her it was okay to give her mother some morphine from the comfort kit. She was trying to make sure she was doing things right, make sure everyone knew what was going on. But they said, oh, I don't want any of that, and just like walked out, essentially. It's as if we, I don't know, like pulled out a gun or something.

12:17This is the way they reacted. It just seemed like a complete overreaction to something that's in a comfort kit. Like they were suggesting it was something illegal or something. Yeah, essentially. You know, they were reacting as if we were, you know, committing a crime, and they didn't want any part of it. Rachel asked the nurse on the hospice hotline how much morphine she should give her mother to ease her pain. And Rachel says the nurse recommended one milliliter. I was so nervous. I was like, you need to double check and make sure I'm drawing up the exact amount because my biggest fear was the idea of making something worse for my mom.

12:58but it's given sublingually under the tongue just a couple of drops of liquid morphine and unfortunately probably because she was so advanced it really made no difference whatsoever she continued to gasp for air and smash her teeth together until she died about 36 minutes later After she died, you know, hospice came and they declared her, and they did all the expected things. They came and changed her clothes, they cleaned her, they dressed her. And the funeral home was delayed in coming to pick her up. You know, she died very early in the morning. The funeral home couldn't get there until like 11, 10, 11 a.m.

13:42And so the funeral home said, you know, you guys can just go home and rest. She probably hasn't had any sleep. Rachel and David started driving to Marsha's house. In the car, Rachel got a phone call from someone at the funeral home who said that there was a problem. They couldn't pick up Marsha's body because it had been taken to Atlanta, to the crime lab at the Georgia Bureau of Investigation. I'm Phoebe Judge. This is Criminal.

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16:42Tell me a little bit more about your mother. What was she like? My mom was amazing. My mom was a brilliant engineer. She was in satellite communications, civilian personnel for the U.S. Army, so she did all of their SATCOMs. But she was also a great artist. She was a painter. She drew something she and I shared in common. We both were very much into art. She did a lot of wildlife art for Audubon, for Ducks Unlimited. And never mind art, she was an English teacher for a year before she went to work for Fort Gordon, so she was also super literary. She had a huge love of literature and poetry, and it was something that really deeply connected us.

17:31Rachel Waters says growing up in the small town of Harlem, Georgia, she always felt like kind of an outsider. I was a weird kid growing up. I didn't know it at the time, but I was later diagnosed with autism. So I was quirky, and my mom was always my steadfast defender, whether it was from school bullies or, you know, my father. I had kind of a difficult childhood. You know, he didn't understand me as much. So my mom and I were extremely tight, and that carried through kind of all my life, you know, before I moved away to New York. We were together every day, whether it was running errands, running to the grocery store, or hanging out in some capacity.

18:13And even when I moved to New York, we talked on the phone every day or texted. About five years after moving, when she was in her late 20s, Rachel did a 23andMe genetic screening test. Her partner David is an Alzheimer's researcher at NYU, and Rachel wanted to know if she had a kind of gene that put her at risk for developing the disease later in life. They would find if you had the APOE4 variant, which is sort of colloquially known as the Alzheimer's gene. And I had a copy of it. And my mom hadn't done the test at the time, but as soon as I came up positive for a copy of the gene, I was really haunted by recollections of family stories of my maternal great-grandmother having senile dementia, as they called it in the early 1900s.

19:05And so I urged my mom to get a test. And sure enough, she also came up positive for the gene. And it was within literally a couple of months that I started noticing just some weird blips here and there. It was just pronoun reversal. So all he's were she's, all she's were he's. But it stayed like that for years. And when I say there was no other sign of decline, this was the woman who did everyone in the family's taxes, including mine, and didn't make a mistake. So there was no real meaningful signal for cognitive decline, but it was a quirk that I sort of made a note of to kind of pay attention to.

19:44But when the pandemic came in 2020 and lockdown happened, I realized that something really serious was happening when her text messages to me became increasingly garbled, really screwing up her spelling and grammar in ways that were really unusual for my mom. And I knew then that she was probably on that downward slope into Alzheimer's. And we rushed down August of 2020. And when I got there, she had aged physically 20 years and eight months, which was when I'd last seen her in January of 2020. She had lost a lot of weight. Her entire spinal column had collapsed from osteoporosis. And I rushed her into a gerontologist and kind of immediately jumped into action to sort of stabilize her bones and hopefully get her on some medication that would slow the march of Alzheimer's.

20:42Rachel says that together with Marsha's doctor, they decided she could remain at home for the time being. And so we managed it initially by just kind of setting up her home in a way that would help her feel familiar and safe and coming down there really frequently. So I was down there every six weeks, and I would spend about a week at a time just to kind of evaluate where her function was, how she was doing. And at first, it's kind of a slow burn. But then when she was diagnosed with multiple myeloma, which also impacts people cognitively, in 2022, she fell off a cliff quickly. And that was when we really had to rush into action to get in-home care.

21:29Marsha began immunotherapy for the multiple myeloma, a rare kind of cancer. But after a few months, the oncologist told Rachel it wasn't working. Rachel remembers the oncologist, said Marsha probably had about six months to live, and suggested thinking about hospice care. The modern-day hospice movement was led by an English physician and social worker named Cecily Saunders in the 60s. She talked about the concept of total pain, which included not just physical pain, but also emotional, spiritual, and psychological suffering. She believed all of it should be addressed when caring for dying patients.

22:12Her ideas inspired the first modern hospice in the U.S., which was founded in 1974. The hospice movement kept growing throughout the next few decades, in part due to the AIDS epidemic. One man who runs a hospice in California has said, many health care workers were afraid to take care of these people, but this was core to the hospice philosophy of care, to deliver on compassion, dignity, respect. Today, around 2 million Americans receive hospice care every year, and many of their caregivers receive a comfort kit, like the one Rachel had. When Rachel got the call from the funeral home that her mother's body had been taken to the Georgia Bureau of Investigation she remembers feeling shocked I mean, did anyone explain to you why?

23:10Oh, I didn't need an explanation why I knew the only reason a person's body would be taken to the crime lab is if someone had alleged that there had been a murder And so my husband was like barely able to continue driving the car because, you know, I have this on speakerphone and he can't believe what he's hearing either. Because typically also you're told what to expect. If someone dies in hospice, they typically do not have an autopsy because it is an expected death. So it's not standard procedure by any means. And so I called the first attorney I could find, Robert Homler, in the area. and he, after relaying my story, he said, yeah, you know, you're almost certainly correct.

23:53They probably are looking at you potentially as a murder suspect or felony murder. So I started Googling, you know, what these potential charges are, what they carry. But also, you know, telling him the story, he and I both felt really reassured because every record showed the reason I was down there was because she was actively dying. She had a prescription for morphine. She had active Alzheimer's and cancer and had been dying for days. She was declared dying long before I arrived. And he, you know, said, I think your odds of ever being charged for anything like this, you know, just like about as good as getting hit by a meteor.

24:36So, you know, as long as you're really thoughtful and, you know, you know that you have all these records, it should be resolved. Later that same day, police officers came to Marsha's house looking for Rachel. Two plainclothes investigators showed up at the door, asked for my phone, asked to speak to me. And I said, you know, you can speak to my attorney and you can get a search warrant for my phone. They came back with the search warrant about three hours later and it had my name and the words homicide on it, which confirmed my fear. but the search warrant also included the comfort kit or the prescription for morphine.

25:14So I was like, oh, thank God, they're going to see that she had a prescription. They're going to understand that this is like a normal course of work for hospice. Did you ask your lawyer, you know, hey, is this something that happens from time to time? He'd never heard of it in his life. It was one reason he and none of the other lawyers, because God knows I talked to a ton of other lawyers to say, you know, what can I expect? Like, how long did these investigations take? Have you ever heard of a case like this? You know, should I have anything to be concerned about? But they did not know of anybody who had been under investigation after their very sick loved one died in hospice.

25:52Rachel spent hours looking for similar stories with no luck. One of the closest things she found was the story of a Philadelphia nurse named Barbara Mancini, who'd been charged with assisted suicide after giving her father a vial of morphine. Her father had been 93 and in hospice care. According to local police, the hospice nurse said Barbara told her she, quote, gave him the morphine at his request so that he could end his own suffering. Barbara said she hadn't said that and that she'd just been trying to help him manage his pain. She was arrested and prosecuted on the felony charge of assisted suicide, but a judge dismissed the case.

26:38The judge said there wasn't enough evidence that Barbara had intended to help her father die, and that the prosecution was relying on speculation and guess. Rachel was worried she could face even bigger charges. Her lawyer thought it was possible she could get charged with something called felony murder. You don't have to kill somebody or even intend to kill somebody, but if they die during the commission of a felony, you can be charged with murder and subject to the death penalty or life in prison, just as if you had murdered them outright. Rachel says she tried for months to get the memory care facility to hand over Marsha's medical records.

27:19Finally, in February of 2024, seven months after her mother died, she received them. When I read through the record, I saw that on July 11th, the day I had gotten into conflict with the nurse about morphine not being prescribed, she charted that I had requested euthanasia, put it in quotes.