Navigating the End of Life Does Not Have to Be a Solitary Journey

CURE, CURE® Lung Cancer 2022 Special Issue 1,

Advocacy Groups | <b>Cancer Hope Network</b>

An expert discusses the resources and support available to people to better face their end-of-life journey.

Patients with end-stage cancer and their loved ones may feel a range of emotions — from relief that the pain and suffering are almost over to shock, denial and often anger. However, there are resources available to aid in this difficult time.

As part of its “Speaking Out” video series, CURE® spoke with Sarah Miretti Cassidy, director of external affairs at Cancer Hope Network, who discussed the kinds of resources and support available.

CURE®: What support is available for patients who might have end-stage disease?

Miretti Cassidy: This is where education really matters. … 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 things that we have found to be helpful is to talk to your hospice team. … 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 there are other resources through your care team, through your social worker, your navigator … so that you can enjoy those last few days with the person you love. 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 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.

What advice do you have for those who may be facing this situation and are unsure how to talk with their providers, or maybe even with their family?

This is one of those times when it’s OK to outsource the start of the conversation. It’s OK to ask your doctor or trusted member of the care team to start that conversation. It’s OK 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. 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. 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?

We always encourage people to connect with a volunteer, whether through Cancer Hope Network or another organization who is providing that peer support; (to) talk to their hospice team. Many hospice providers or organizations offer support after a loved one has passed. Then, whether you’re connecting through your social worker or navigator, your hospice care team, (or) 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 (is) 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. … 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 that you don’t have to know the right answer. There isn’t a right answer. It’s an awful situation. And it’s OK not to know and it’s OK to ask for help.

What is your biggest piece of advice for those who might be near their end of life or are mourning the death of a loved one?

Find peace where you can. For some folks, that’s talking to a therapist (or) 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. Whether it’s wonderful, whether it’s awful, whether that’s both of those extremes in the same five minutes, it’s OK (to feel that). And to know that you’re not alone. You are not the first person to walk through 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 OK. I would encourage people to call Cancer Hope Network and get connected to somebody to talk to. There are so many wonderful community groups, so many professionals. Talk to somebody.

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