Advocate Discusses Types of Support for End-Stage Cancer Available for Patients and Their Loved Ones

CURE Speaking Out | <b>Highlighting the Importance of Support for Patients and Loved Ones Throughout the Lung Cancer Continuum </b>

As part of its Speaking Out video series, CURE spoke with Sarah Miretti Cassidy, from Cancer Hope Network, about seeking support for patients who may be nearing end of life, as well as support for family and friends after a loved one has passed.

What are some of the changes or emotions that might come with end-stage cancer?

There really is a wide variety. For some people, it's relief. Their pain and suffering is nearly over. For many more, it's shock; it's denial. No matter how your treatment has been progressing, no matter what your diagnosis, many of us hold hope very close, and hold hope for whatever we call it, whether it be a miracle, a cure, or whatever it is, we hold that hope so close. And hearing that your life is coming to an end or a loved one's life is coming to an end can be really shocking. And for many people, there's denial, right? “This isn't me. I'll fight. I’ll continue.” I think there's a wide variety of emotions in between.

Can you discuss the types of support that are available for patients who might have end-stage disease?

So I think that this is a place where education really matters. We as a community have been building in improving the resources that we offer to patients, to their loved ones, who are moving towards the end of their life, or whose loved ones are moving towards the end of their life. And so to go back to my mantra, my refrain: Ask, ask, ask or talk, talk, talk. We hope that by the time someone reaches the end of their life, that they've already been working with a palliative care team. But one of the pieces, one of the things that we have found to be helpful is to talk to your hospice team.

For many years, at least in my experience, hospice was viewed as, when everything is so terrible and there's three days left to live, they're going to come in and shoot my loved one up with morphine. But hospice offers so much more. It offers time, it offers the ability to be with your loved one. And with them, rather than caring for them, because hospice can offer so many resources, and other resources through your care team, through your social worker, your navigator. There's resources available so that you can enjoy those last few days with the person you love. But those last few weeks, or those last few months, talk talk, talk.

It's not easy, right? I was talking with someone the other day and they were saying, “Despite our best efforts, the death rate is still 100%.” And that's true. None of us are getting out of this alive. But at Cancer Hope Network, and for so many other professionals, our goal is not only to give you the best quality of life, but also to help people to find a good death. We know we'll all leave this world at some point. What's the best way to do that?

So an organization like Cancer Hope Network is here to help provide support for loved ones and caregivers who may be going through anticipatory grief. And then there's a lot of other resources that are available to patients or their loved ones.

Do you have advice for those who may be facing this situation to help them talk about it, whether it's with their providers, or maybe even with their family?

It is a hard conversation, right? No matter how much through my professional life, and my work with Cancer Hope Network and having gone through hospice and volunteer training and things like that, I know this intellectually, but it's very different. No matter how much intellectually, how many books you've read, podcasts you've listened to, or people you've talked to, it's really different when it's your mom, your husband, your wife, that you're having to have these conversations with.

So this is one of those times when it's okay to outsource the start of the conversation, right? It's okay to ask your doctor or trusted member of the care team to start that conversation. It's okay to talk with a Cancer Hope Network support volunteer and then start that conversation with, “I was talking to my volunteer and they mentioned…” The important piece is really starting the conversation. So whatever you need to do to start that conversation, whether it means having someone else begin it, talking with someone to work through what you want to say. It's fine. We really encourage people that having the conversation is most important. How it starts is not as important.

On the other side, we have caregivers and loved ones who are also affected by an end-stage cancer diagnosis. So what resources are also available for them to deal with a loved one who's near end of life or maybe who has recently passed?

So we always encourage people to connect with a volunteer, whether through Cancer Hope Network, or another organization who is providing that peer support, talk to their hospice team. Many hospice providers or hospice organizations offer support after a loved one has passed. Then, whether you're connecting through your social worker or navigator, your hospice care team, Cancer Hope Network’s programs team, ask them for suggestions and resources.

There are a ton of resources out there to help plan for the end of life, whether that be a checklist, whether that be advanced care directives, walking through the practical pieces of the end of life are important. It's important to have a DNR (do not resuscitate) or to have discussed that, or to have talked through your advanced care plan. But it's also important to know what's the password to pay the electric bill.

One of our program coordinators at Cancer Hope Network is an end-of-life doula. And so she has helped to create an end-of-life checklist of the big discussions to have, but also the small pieces that are really important. One of our volunteers, kind of going back to that point of how hard it is to have these conversations, she talked to her husband. She was like, “Hey, you're leaving me in this terrible position, I would not do that to you. Let's have this conversation.” And for her that worked. For other people, it may be something more gentle, but there really is value. And it's so important to be looking ahead. And then to listen.

Most of us have not spent a lot of time imagining the end of our life. And giving your loved one, the opportunity as a caregiver, to remember to be scared, to be mad, process through those emotions. That can be really important. I think it's an important thing to remind our caregivers is that you don't have to know the right answer. There isn't a right answer. It's an awful situation. And it's okay not to know and it's okay to ask for help.

What is your biggest piece of advice for those who might be facing this type of situation – whether it's a patient near end of life or their loved ones who have recently lost somebody?

I think my biggest piece of advice is to find peace where you can. For some folks, that's talking to a therapist, for some folks that's talking to their spiritual leader, for others it’s sitting, or walking down memory lane, sometimes it's watching movies, whatever that happens to be, find the peace. And I think it's also really important to know how you're feeling is okay. Whether it's wonderful, whether it's awful, whether that's both of those extremes in the same five minutes, it's okay. And to know that you're not alone. You are not the first person to walk through this process, the process of dying. Oftentimes our caregivers will talk about anticipatory grief. I'm so sad. But my loved one is still here. And you know, it's okay. It's okay to feel that. And you're not alone. There is someone who you can connect with. I would encourage people to call Cancer Hope Network and get connected to somebody or to talk to. There are so many wonderful community groups, so many professionals. Talk to somebody.

Transcription has been edited for clarity.