Finding Peace at the End of Life & Preparing for Death from Cancer

Dr. Diane Reidy-Lagunes:

Death. Dying. End of life. The pull from the other side. As a society, we often shy away from talking about this, but what does a good death look like? And how can we overcome the fear associated with it? Let's talk about it.

Hello. I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center, and welcome to “Cancer Straight Talk.” We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier, healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us mskcc.org/podcast.

Today we are joined by hospice nurse Hadley Vlahos, otherwise known as Nurse Hadley to her million-plus followers on social media. Hadley is the author of the New York Times bestseller, "The In-Between: Unforgettable Encounters During Life's Final Moments." In her book, she shares life lessons she's learned from her patients, and reflects on how we can face mortality and best live in the now. We are also joined by Dr. Alan Carver. He's a neurologist here at MSK specializing in end-of-life and palliative care. Alan and Hadley, welcome to the show.

Nurse Hadley Vlahos:

Thank you for having us.

Dr. Alan Carver:

Thank you very much, Diane.

Dr. Diane Reidy-Lagunes:

Hadley, in your book you talk about the “in-between” in the final days of one's life. Can you share with us what you exactly mean by the “in-between,” for those who may not have read your book? And I can tell you it's absolutely terrific. If you haven't read it, you should.

Nurse Hadley Vlahos:

Thank you. I take care of patients who are in-between this life that we're all in right here and whatever comes next. There's a lot of different phases of that, and there is a specific phase where you can kind of feel people move between worlds, in my opinion. That's what I consider to be the beautiful “in-between” space that we all get to witness.

Dr. Diane Reidy-Lagunes:

Absolutely. Alan, have you felt this “in-between” in some of your patients that you've cared for over the years?

Dr. Alan Carver:

This is an extraordinarily challenging area. We all have many patients for whom there is that time when they begin to realize they need something else from us other than, “What's going to be the next chemotherapy?” Because in fact, what they need from us is a different sort of skill set. It's a skill set that says, “You may not make it. You may not survive this illness, but we're going to be here for you.”

I'm not sure, Hadley, if it fits in with your conception or not, but it might. To me, the “in-between” is about making that journey with the patient, with the family, and making sure that they recognize that whether they're going to survive this illness or not, we are there and we know what to do. I think giving patients that kind of reassurance as we're moving closer to the end becomes a critical way of caring for them.

Nurse Hadley Vlahos:

I completely agree. A lot of people tend to think that we're saying we're giving up whenever we say hospice. And I love how you're explaining that, no, this is just different. It's not necessarily that we're not doing anything. We're just taking a different approach now. I totally agree with you.

Dr. Alan Carver:

It's a very good point. Sometimes we have to spend some time talking about the fact that no one is giving up. Just because we are recommending, if you will, a different sort of care, a different set of goals perhaps, doesn't mean that we're going anywhere. I think that's a very, very important distinction to be made.

Dr. Diane Reidy-Lagunes:

I agree. As Alan said, we all have hope. That's part of being human, especially when you're given a life-threatening diagnosis. But the emotion that often comes up when we've exhausted the treatment is fear. And I thought what you did so beautifully in your book, Hadley, is by connecting with your patients, you were able to calm that fear and get to a place where in many ways, the beauty comes out as you go into that “in-between.” And yes, there are obviously a ton of other emotions including sadness and grieving, whether it's before or after death. So how do you help your patients ease that fear?

Nurse Hadley Vlahos:

I do a lot of talking on social media, and I think what would surprise people is that when I'm in the homes, I do a lot of listening. People know that I can't give them all the answers, but I think what a lot of people want is they want someone to listen to them. And even just voicing those fears, I find that that helps them just to put a name to it and say, “I am scared.” Having someone listen to them and say, “I have heard that so many times. I think that is very normal that you are scared,” and just lending a listening ear, I think can really make a big difference.

Dr. Diane Reidy-Lagunes:

You also talk a lot in your book about how some of that fear may, for some patients, be alleviated when they can actually see their loved ones from the other side waiting for them. Can you share a little bit of that with us?

Nurse Hadley Vlahos:

It's always beautiful to see when a deceased loved one comes to get someone. It doesn't always happen, but when it does happen and when we have patients say that they are seeing their deceased loved ones, it's really beautiful to witness because it brings this sense of calmn and peace.

One patient that really sticks out to me in my book had a COPD exacerbation, where she thought it was the end. I thought it was the end as well. When I got her oxygen levels back under control, through morphine and all of that, she shared with me that she thought it was the end. And although she had a ton of faith, when it came down to it, she thought that everything was going to go black and she was very, very scared. I listened to her and said, “I think a lot of people feel that way.” Then a few nights later, once she had declined a lot, I asked her if she was scared and she said, “No. My husband is here, and he is coming to get me. I'm not scared.” That is something truly so beautiful to be able to witness.

Dr. Diane Reidy-Lagunes:

Absolutely. Alan, is there anything else you do that can help alleviate that fear?

Dr. Alan Carver:

We say that a promise of non-abandonment is a central part of this mission and of this work. Patients come to us and it's often, initially, all about the disease. It's all about the cancer. They don't even want to hear about anything other than what we're going to do for that disease. And gradually as we get to know patients, we begin to help them recognize that the disease may overwhelm but it doesn't mean that the person isn't going to be cared for.

Dr. Diane Reidy-Lagunes:

I think one of the other reasons why people have fear is the fear of pain or the fear of symptoms. I think Hadley does a really great job in this book at articulating that many patients want to be at home, but sometimes you may not be able to be at that home. So hospice can sort of decide that you need to be in a setting where there are IV medications and other things. I think there are still many obstacles in terms of hospice for patients and caregivers. Let's hear from Michael when he talks about the transition from active treatment to hospice for his wife, Stacey.

Michael Peltz:

My name is Michael Peltz. My wife Stacey had cancer for 11 years. This summer, it took a turn for the worse. It was no longer treatable. And 22 days later, she passed away. The last two weeks of that was spent doing hospice.

We came home first. You go from having all the resources of a hospital where there are people to take care of your loved one 24/7, and all of a sudden, you're the person. One of the things we tried to do is we tried to keep it as normal as possible. And at this point, Stacey had lost a lot of mobility. We had hopes that during hospice, she would be able to go sit by the pool, hang out with the dogs. It was pretty clear that that wasn't going to happen. Her medical needs were actually more than we can handle. So we were able to get Stacey admitted into this hospice facility. There’s a love and a care there that is just very special. It helps. It really helps.

For people who are choosing between doing hospice at home or doing hospice in a facility that specializes in it: It's a personal choice and it depends on the condition of the patient, but don't be afraid to use a facility. From our standpoint, it turned out to be a great choice.

Dr. Diane Reidy-Lagunes:

That’s very powerful. Nurse Hadley, maybe you could share the story of your own mother-in-law and what happened when you were caring for her, and when she went into the hospital, because I think that was also very powerful.

Nurse Hadley Vlahos:

While I was a hospice nurse, my mother-in-law had glioblastoma. She had it for three years before she passed. We had her at home on hospice. I was going to have the absolute ideal, perfect death for my mother-in-law, like I had done for so many patients before her. But life happens.

There was a category-five hurricane that was headed our way. I went to our doctor, just like Dr. Carver, and I said, “What do I do?” And he very frankly said, “You need to leave. Whenever the roads close, they'll pull everyone off the roads. Don't get yourself into a situation where you're going to be in that home, and no one can get to you.” So we left the state. We came a few states away, rode out the hurricane, and then we came back after the roads opened.

We got my mother-in-law back to the house. She was having difficulty breathing so I went to go grab the morphine because I was like, “I know what to do. This is my job. I do it every day,” and realized I had forgotten the morphine in the fridge at the rental home. I tried to call the pharmacies and all the pharmacies were still closed. We ended up in the hospital, which was just my worst nightmare, and she died in the ER.

I really struggled with that for a long time, that I was able to give so many people a very beautiful death and I wasn't able to give it to my mother-in-law. But in hindsight, I believe everything happens for a reason now. My husband had actually been pulled to a different clinic due to the hurricane, so he was just right down the road and he was able to be there when she died. He believes that that is the reason that happened, and he needed to be there for his mom whenever she died.

Dr. Diane Reidy-Lagunes:

I believe that too. We often say, sometimes it's hard for the patient, but sometimes it's harder on their family if, like Michael, there are just too many symptoms and challenges to keep a patient from having that suffering. So any advice? Like, is that a team approach typically or is that something that you try to guide? What do you do to decide if a patient should be at home or in a facility?

Dr. Alan Carver:

Both of you have emphasized there's no right or wrong. Many people seem to want to try to die at home, if you will. That comes up a lot in conversation. But one of things that's very important, and this came up in your interview, is the notion of always having options, of there always being another plan if this one doesn't work. Many home hospice providers have what we call an inpatient backup, if you will. So sometimes things fall apart a bit at home and people end up in an inpatient facility. Knowing that those options exist, knowing that no one is a failure if it doesn't work out, can be a very important thing.

Dr. Diane Reidy-Lagunes:

We always want to meet our patients and their family and loved ones where they are, but sometimes we are a little bit too late in having those conversations about what's important for them. When is the right time to have those critical conversations?

Nurse Hadley Vlahos:

Right now. I've had them with my family and I'm 31. So the time is whenever you think that you don't need to have those conversations. Now is the right time.

Dr. Alan Carver:

I agree with Hadley entirely. We always say in palliative care circles that earlier is better. Having said that, there is a delicate sort of dance that goes on. I find, frankly, that if it's the very beginning and I'm just getting to know the patient and the family, and it's very clear that all they really want to know from me is: will they live? And if so, for how long? And what am I going to do to help that process? I sometimes I feel like if I mention words like “hospice” or “palliative care” at that early juncture, I'm risking not seeing the patient again.

So I find that it's very important for something to happen in terms of trust. Something has to happen in terms of the relationship between patient and family and provider that really helps to facilitate those conversations. So early on, yes. But not always in the first visit.

Nurse Hadley Vlahos:

I have many people who will come to me very hesitant and they're like, “I don't know if I do hospice.” And I always say, “It's not jail. All you have to do is call us and you're off it. If you want to try it out and you don't even have another doctor's appointment scheduled for two weeks, let me come by a couple times and let's see.” And I've actually never had anyone come off whenever I approach it in that way.

Dr. Diane Reidy-Lagunes:

Yeah. I think there's a huge misconception that hospice somehow hastens the outcome. Where in fact, it's the exact opposite, right?

We have talked on the pod in the past that we do something at MSK called “Death Over Dinner,” where we're all having conversations on what would be important for us if we were to pass, so that our family members and our loved ones will be aware, because like you said, you never know, for any of us, if tomorrow is going to be there. The most ideal is that we all talk about it before you get a diagnosis. But I think you're right, Dr. Carver, once you get that life-threatening diagnosis, then that fear kicks in and so does the, “Give me a plan and let's go.” So trying to talk about this too early could give a response that you didn't intend it to have, right?

I always tell patients, “We're going to have a conversation with every scan, and this is a conversation that is going to be iterative and we're going to have that open dialogue.” I make sure that that communication is something that they're going to feel safe to have, because we don't want to miss an opportunity. But we also know that sometimes patients are like, “Oh, don't go there right now.”

Dr. Alan Carver:

I think it's helpful to think about the idea that palliative care doesn't begin with hospice. We've now seen in a number of medical centers, not only our own, that the people who receive good palliative care – good symptom control and focus on quality of life – not only do they live better, but they also live longer. I think that's all part of demystifying what happens at the end of life. It’s perhaps delivering a higher level of quality of care really, really earlier on.

I was telling your staff about a patient we had who was one year into a brain tumor, looked well, and had a seizure. So I came into the hospital, and we learned that the family was planning a big wedding, but the wedding was in three years. The patient looked well, the patient was still working, the patient was traveling. They had no reason to think that this wasn't going to happen in three years. But we did. We know the disease.

So we sat down with the family, and we gently shared our fears that this wedding may not happen the way they wanted it to happen. They were so enormously grateful for the information and for the opportunity to think about, “What does it mean to have a good quality of life now?” They changed all the plans. They made the wedding much, much earlier, and now they could take the pictures with the father and the daughter walking down the aisle the way they always wanted, the way they always imagined. So I think it's all part of making that cross into the next world a little easier, by caring for patients a little better, earlier.

Nurse Hadley Vlahos:

I agree. And just as a side note, for anyone listening, we’re not used to being able to talk to doctors like this, but something I always get in my direct messages is caregivers saying to me, “When should I bring up the hospice conversation to my doctor?” And I say, “Do it. Just do it. It's not going to hurt anything. Just ask them.” It would never offend your doctor if it were asked, “Will you let me know whenever hospice might be appropriate?”

Dr. Diane Reidy-Lagunes:

Our biggest hope is for families to be present and be able to find meaning in those last moments, rather than suffering and feeling burdened by hospice. Let's hear from Thomas and his mother Sandra Paris on how they were able to find joy in the final moments with his sister, sweet Eliza.

Thomas Paris:

My name is Thomas Paris. My sister Eliza Paris Harrison was diagnosed with stage four appendix cancer, and after a courageous multiyear battle, passed away at the age of 28. Eliza was sent home into in home hospice care for roughly two weeks before ultimately moving into a facility for 10 days and passing in that facility.

As the caretakers, I think we all unanimously agreed in the moment that it was going to be a difficult process, but we wanted her to have the most comfortable, loving surroundings that we could give her. We would just leave the door open. That's what Eliza always asked, to leave the door open and carry on as normal when she was resting, just so she could hear us and know people were out there. I thought that was special, and we always did that. We'd open a bottle of wine at 5:00 PM and sit there and have a glass of wine and talk and catch up, and she enjoyed and could hear us. If she needed something, she would call or yell if she wanted to.

I was on the couch sleeping for that month, and that's right where the kitchen was, so there were plenty of times where I'd wake up to mom cooking like a roast beef and her squishy carrots, as Eliza called them. It was 4:30 in the morning and I was like, “What are you doing?” And she was just like, “Eliza called and wanted dinner.” She had been sleeping all day long and she woke up and had a few good hours of awakeness, and it led to us all waking up and cooking a feast and getting to spend 4:30 to 7:30 in the room with her.

Sandra Paris:

We took advantage of that time with her. We're so blessed we could all be together.

Dr. Diane Reidy-Lagunes:

A blessing indeed. Caring for Eliza was one of the biggest privileges of my life, and I can't hear that without tearing up a little bit. That was Eliza's brother and mom. I'd love to also hear from Eliza's husband Greg on how he dealt with all of this.

Greg Harrison:

As a spouse, I dealt with it obviously a lot differently than as a sibling and certainly then as a mother. But I think at the end of the day, we never left each other's side. I felt like I did the bulk of my grieving while we were in hospice, especially the last few days when we understood the gravity of it, we were managing her pain, and we were waiting for her to pass. That's where I wrote her eulogy.

So once she did pass, it was then more about staying together and talking about her and enjoying and celebrating her. I think we all had a full heart when she inevitably passed because we were able to have those difficult conversations. We were able to hear her wishes, and she came to peace with it. Truthfully, she was in so much pain to the point where she was ready. She said, “I'm ready to go.” That's somewhat reassuring as a caregiver. I felt a little more comfort that she wasn't scared.

Dr. Diane Reidy-Lagunes:

Hadley, any thoughts or advice for folks that feel that way? Some people can actually grieve even before their loved one passes away. And obviously for some, it takes a lifetime thereafter.

Nurse Hadley Vlahos:

Yeah, anticipatory grief is very real. It is normal to feel relief when someone passes. It is very hard to watch a loved one suffer in that way. I think a lot of people have a lot of guilt around feeling relief, but I don't think they should feel that way. I think it's a lot more normal than people think it is.

Dr. Diane Reidy-Lagunes:

Have either of you had experiences with end-of-life care changing you as a clinical care provider?

Nurse Hadley Vlahos:

So many ways! It's completely changed my life, 180°. I feel like I'm very happy to wake up in the morning. It is a privilege to get that daily reminder of the spot that we will be in one day. And I constantly think about what I will want to tell my hospice nurse whenever I'm in that spot one day. Am I living my life to the fullest, where I'll be happy with who is around me and the stories that I'm sharing?

Dr. Alan Carver:

It resonates with me when Hadley says privilege. It is indeed a privilege to do this work. Many of us go into medicine because we want to make some sort of impact, some sort of difference. I think when you do a lot of work in palliative care and end-of-life care, you begin to realize how impactful you can be with sometimes very basic tools.

My mentors often say, “If we never have another drug, if we never have another study, if we just use the expertise that we have right now, and we really use it wisely and with compassion and with intelligence to care for our patients and their families, we can go such a long way.” For me, it's less about death and dying than it is about life and living.

Nurse Hadley Vlahos:

I love that. I love that you said it's about living. What I think a lot of people don't know about our careers in palliative hospice care is that death is actually a very small part of our days usually. A lot of it is caring for our patients and building relationships.

Dr. Diane Reidy-Lagunes:

From a society perspective as well as in western modern medicine, like you said Alan, we could do better if we just used a little bit more compassion, a little more understanding, and listened a little bit more to what actually is happening.

Sometimes there is suffering that goes on, but we talk about this concept of a good death and preparing. Let's hear from Michael again, and how he feels hospice helped Stacey find peace in her death.

Michael Peltz:

For me, Stacey, and our entire family and friends, hospice really turned out to be a very beautiful experience. It was difficult, emotionally, physically. It takes a lot on you. It takes a lot on everybody. But it made probably the most difficult thing I've ever had to go through doable. We were able to do it and do it well and do Stacey proud. We made her comfortable, we made her happy, as happy as someone could be dying. I don't think you go happily, but I think the best you could ask for is peacefully.

Dr. Diane Reidy-Lagunes:

He says that beautifully. Hadley, Alan, is there anything that you hope for your patients in their last days? Is there anything, when you see your patients in those moments, that you're able to help them with as they pass over?

Nurse Hadley Vlahos:

I just always hope that they are at peace. That's really my biggest thing. That encompasses a lot: that's pain free, it’s that feeling a calm within, with whatever they believe and whatever they think. I just want them to feel at peace with the process.

Dr. Alan Carver:

I think that's expressed beautifully. In the way Michael expresses it, it sounds like that was very much achieved. I would love to say we always get there, and it's challenging to get there sometimes, but that’s the goal, to achieve that level of peace if we can.

Dr. Diane Reidy-Lagunes:

We'll end with some final thoughts about grief from Eliza's brother Thomas, and her mother Sandra.

Thomas Paris:

Someone said that grief is the price you pay for actually truly loving something. And if that's the price I got to pay for the experience I got with my sister and how lucky I am for her to have been a part of my life, then that's a price I'm happily willing to pay.

Sandra Paris:

You learn that joy and grief can walk side by side. I think it's okay to laugh and enjoy life because she would want us to. But when joy and grief can walk together, that's when I’m doing my best.

Dr. Diane Reidy-Lagunes:

Amen. Hadley, Alan, thank you so much for all you do for our patients and for our society and for being who you are.

Nurse Hadley Vlahos:

Thank you for having us.

Dr. Alan Carver:

Thank you. Wonderful invitation.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or to send us your questions, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing it on Apple Podcasts or wherever you listen. Any products mentioned on this show are not official endorsements by Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.