Facing the End of Life
Listen to the podcast to hear Kelly talk about:
becoming comfortable with talking about the end of life
why stopping treatment is not giving up
hospice care — what it is and when to start talking about it
how to talk to children about the end of life
Photo credit: Geordie Griffiths
Kelly Grosklags is an experienced therapist who dedicated her practice to minimizing suffering through her work in oncology, palliative care, and hospice. Kelly is a licensed clinical social worker, a board-certified diplomate in clinical social work, and a fellow of the American Academy of Grief Counseling. She is the author of A Comforted Heart: An Oncology Psychotherapist Perspective on Finding Meaning and Hope During Illness and Loss. Kelly now teaches and speaks frequently about end-of-life issues, including care, grief and loss, both in person, on her website, Conversations With Kelly, and on her Conversations With Kelly Facebook page. Her passionate and supportive demeanor helps patients, caregivers and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus curing, and the wisdom of dying a good death.
— Last updated on February 11, 2022, 7:58 PM
This content made possible by Lilly Oncology.
This podcast is made possible by the support of Lilly Oncology.
Jamie DePolo: Hello, everyone. I’m Jamie DePolo, the senior editor at Breastcancer.org. Welcome to this edition of our podcast. Our guest is Kelly Grosklags. For nearly 25 years, Kelly has dedicated her practice to minimizing suffering through her work in oncology, palliative care, and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a board certified diplomat in clinical social work. She also earned a fellowship in grief counseling from the American Academy of Health Professional. Kelly speaks frequently about end-of-life issues including care, grief, and loss. Her passionate and supportive demeanor helps patients, caregivers, and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus curing, and the wisdom of dying a good death.
Kelly is going to talk to us today about some difficult issues but some very important issues. We’re going to talk about facing the end of life. Kelly, welcome to our podcast.
Kelly Grosklags: Thank you, Jamie. Thank you for the invitation.
Jamie DePolo: This is a hard topic, but as we all know it’s a very important topic. So, just as every breast cancer is different, every person’s reaction to facing end-of-life issues is going to be different.
Kelly Grosklags: Correct.
Jamie DePolo: How can someone think about these things without panicking or becoming really upset? Is there sort of a step-by-step process that they can go through?
Kelly Grosklags: Well, you know, first of all I want to say it is a hard topic, and yet it’s a topic that most of my patients that I work with who have metastatic disease have certainly thought about at some point. And actually not talking about it is harder than talking about it. So kudos to Breastcancer.org for taking the initiative and having this conversation.
My goal isn’t to necessarily approach this so that people don’t panic, per se. I think whatever feelings come up for people, they need to have those feelings. And panic or anxiety initially would be something that I would expect because it’s a shift, and it’s a change in treatment, it’s a change in what we know. Eventually, obviously we want to try and help people be calmer and be able to make good decisions. But if you’re feeling anxious or your family is feeling anxious, certainly that is part of all of this.
Sometimes, actually, anxiety or discomfort in how we’re feeling can motivate us to make decisions or can motivate us to want different. And I think that’s important to know, first of all, is that I would expect that. I would expect that there is going to be some ambivalence, there’s going to be some anxiety that comes along with hearing that we do not have any more medical treatments to try and manage this cancer. Like I have talked about in the past, there are a lot of options that we can offer once treatment stops -- and we can get into those later -- which would be palliative care, hospice, which is a very aggressive form of comfort care psychologically, physically, emotionally, et cetera.
So one of the things that I want people to do, first of all, is just kind of sit with the news, not have to try to figure it out right now all in one day, but kind of sit with it. If there arises panic, anxiety attacks, whatever it may be, it would be important to look at, “Do I need some medication to help me calm down the anxiety?” This would be also very expected. And a lot of the people I work with will take something so that they can be calmer and somewhat more clear in their thinking so that they can make the best decisions that they can make for themselves.
In terms of a step-by-step, you know, I always encourage people first of all just to be wherever they’re at. And sometimes people don’t have an initial reaction of anxiety because they have been living in this body, they’ve been living with this disease, they know that they are declining, they know that things are not getting better. So sometimes the news that they hear actually is just an affirmation or… I mean, I’ve even had people say to me, “It’s kind of a relief to know where I stand.”
It’s really being where you’re at and again, if it’s a physiological kind of panic disorder, so to speak, that we’re seeing, or the person is not able to concentrate, racing heart, not sleeping, feeling really agitated, those things for a long period of time, then we’re looking at more needing a medication from the physician. So then we can start making some steps.
Again, it’s important to reassure yourself that you’re not going to be abandoned, that there’s going to be a healthcare team, there’s going to be your support people that are going to see you through this. So that can also help ease some of the anxiety.
Jamie DePolo: I know on our Discussion Boards, some women have told us that when they made the decision to stop treatment, some of their friends or family members felt they were giving up. How do you counsel patients about making that decision and then telling their loved ones about it in a way that sort of, if possible, to kind of offset those kinds of remarks?
Kelly Grosklags: You know, this is such a hard thing for me when I see this, when I see people having to put the energy into this. Because I don’t know one person living with metastatic disease that hasn’t done everything they can do to try and treat the cancer to the best that they can, and some people have tried way beyond what’s even medically recommended. So it is very sad when I work with people and I see that they, not only on top of their own grief and loss and anxiety about the decision, they’re having to now manage the experiences or the feelings of their family. And that’s just an added layer that I always feel such empathy for people because that makes it so difficult.
And first of all, I want to make a distinction that people are not giving up, they’re actually making good choices. They’re making good choices based on all the information that they have from their healthcare team, from their own intuition, from their own body. And I think that’s an important distinction for people to hear, that there isn’t a ‘giving up,’ so to speak. It’s actually making good, informed decisions. And I think that’s a really important piece that we have to specify with this, because the giving-up piece kind of plays into that whole analogy that a lot of women that I work with that have metastatic breast cancer don’t like, the terms ‘battle’ or ‘fight.’ And this kind of plays into this. Like they’re giving up their fight, they’re giving up their battle. I don’t see it that way. I see it as that when the decision to stop treatment, which oftentimes is a very appropriate decision, and it’s based on a lot of different things, specifically the body is not responding to the treatment and the person is feeling very sick, in a lot of pain, a lot of side effects. So it’s actually an informed, good decision to make, and I think that that’s really important that people make that distinction.
Another thing I want to say is that everybody is allowed to have their feelings. So if a family member is feeling upset about this or a loved one is feeling upset about it, we need to let them have that. And what I encourage my patients to do is to put a boundary around it. Sometimes you have to put a boundary around it, and you may not be able to interact as much with family or friends who are pressuring you or saying things like, “You’re giving up.” You may have to distance yourself from them for a while, let them have their feelings, because under those feelings are generally feelings of fear and grief. And it comes from a place of love, but it’s not helpful when you’re going through those decisions and trying to make end-of life-choices for yourself. So sometimes we have to distance ourselves from the people we love the most, but it often is in our best interest.
We also have to say things to people like, “You cannot rely on me for the support of this decision. You’re going to have to seek some outside counsel and get support.” Whether that’s through a therapist or a person of faith or their own friends, whatever that may be. But the person living with the disease cannot be the support person for everybody around them trying to manage everybody’s feelings.
Jamie DePolo: Right. They have to conserve their energy for themselves.
Kelly Grosklags: Absolutely. Absolutely. But again, I just think, you know, because I have many people that come into my office that will say to me, “I’ve really let down my family by deciding to stop treatment.” And this isn’t… to me it’s not a giving up at all. It’s a surrendering and it’s a making an informed, good decision. And I think that’s the difference.
Oftentimes I see people treat way beyond what they likely should be doing, and they’ve suffered long enough. If you’re a caregiver or a loved one listening today, I hope that you can start looking at this, acknowledge your pain and your grief, because this is obviously very painful. But also at the same time, think of the person that you love who has worked so hard and has exhausted often every option that has been offered to her. And I think it’s important that we start looking at this as this is the best decision that can be made for them, for their quality of life, and that we no longer want to see them suffer.
People don’t stop treatment unless there’s a reason. I mean, it’s not just something people decide to stop. There generally is a very good reason for it. It’s either their bodies aren’t tolerating it, the disease is not responding, the side effects are so horrific, the treatments themselves can be what possibly could kill somebody versus the disease. So it’s important to remember that when people stop treatment it often has a very good basis, and a lot of decisions and discussions that have gone into it.
Jamie DePolo: Very, very good advice. Now, when someone has come to terms with end of life, made the decision to stop treatment, are there things she should do or focus on first?
Kelly Grosklags: I see most people very, very worried about the people that they love. How is this going to affect the people that they love? And there’s a time and a place for that, but the first person you have to start with is yourself. And one of the things that I will often ask women -- first of all I will ask them, generally the week that they make the decision, “How do you feel about the decision now that it’s made to stop treatment? How do you feel about the information that you are terminal and facing the end of your life?” Then I’ll check in again with them in a couple of weeks when I see them, because sometimes things can change.
But the person you have to start with is yourself, and I will do an exercise with people where I will ask them, “Is there anything you haven’t said to somebody that you need to say, whether it’s ‘thank you,’ ‘I love you,’ ‘I forgive you,’ ‘I’m sorry’?” And those are things that I will talk with women about at the end because I want her to be in the best psychological place and emotional place that she can be as she’s dying. So we start with yourself.
Then another thing that I will often do is I will say, “Is there anybody that you would want a letter written to for after you die, whether it’s a child’s graduation, a child’s birthday, an anniversary, a thank you letter?” And oftentimes, as difficult as these letters are, most people will say yes. So we sit down together and we write birthday cards, anniversary cards, wedding cards, graduation cards, whatever that might be for this person that they love so that after they have died they will be represented at these events. So there’s a lot of tasks that can go into end-of-life work so that people can feel good about themselves.
And I really encourage people… we are not very good at being selfish as women, and I think it’s important -- and it’s not even being selfish -- but if there’s any time in your life where you’re going to be selfish with your energy, it’s at the end. And I think it’s really important for people to hear and get the permission that they get to absolutely focus on what they need and not necessarily what everyone else’s need are yet. Again, there’s a time and a place for that, but initially we have to encourage people to really focus on what they need.
That also includes who do they want around? Where do they want to die? What types of surroundings do they want to have? Do they want to be more lucid? Is their number-one issue pain control? Is their number-one issue being alert so they can talk with people? These are just discussions that hopefully have happened earlier on through advance directives, et cetera. But if they haven’t this would be the place to start.
Jamie DePolo: I’ve heard you say that you think hospice often gets involved too late in the whole process. Can you talk a little bit about that and also maybe some suggestions about how somebody could find a hospice that best suits their needs?
Kelly Grosklags: I’m glad you brought this up. I do feel that the average stay in hospice -- the statistics keep changing, but we often see them -- it’s 3 to 7 days at the end of somebody’s life, and sometimes it’s hours. Because I’m very biased and I have a hospice background and I know what hospice can offer to people, I feel it’s a real unfortunate neglect at the end of life if people don’t utilize it at an earlier time.
Now, hospice -- you cannot be in hospice if you are actively treating your cancer. So that is one of the qualifications that deters people from going into hospice. That’s where then we want to look into palliative care. And we would start with palliative care because you can still be in treatment in palliative care, but it has a wonderful philosophy of looking at comfort, and it can be a nice bridge to hospice.
Hospice is a conversation that really should be introduced to people the moment they find out that their disease is metastatic or terminal. And it doesn’t mean that they’re going to go into hospice when the conversation starts, but it is something that should be talked about as the option that will be available to people later on. It’s something that I would love to see more of our health systems educate people earlier on in the process. Because in the end when you’re told this, naturally you’re going to have all of these reactions. Then you’re thrown into it, “Okay, we want you to meet with this team,” and it can be real chaotic. And I think that it’s really unfortunate when it goes that way versus knowing about it ahead of time and then having that as part of your, I don’t know what you want to call it, your options for at the end of life.
Now, one of the things that people feel -- again back to the giving up -- I have heard many people say, “Well, I’ll call hospice when it’s really bad.” And again, I have hospice patients, Jamie, right now, that are traveling around the world, and they are probably feeling the best they have felt since they were diagnosed. And that has a lot to do with they’re not in treatment, they’re getting really good pain control, they’re doing the things in their life that they want to be doing, they’re focusing on what matters, and they’re really focusing on just living each day. They’re not bogged down with the anxiety and the stress of, “Is the treatment working? What is my scan going to look like?” There’s this liberating relief, oftentimes, that I can see with people in hospice. So hospice isn’t a situation necessarily where you get into bed and you don’t ever come out and you stop living. It’s actually the opposite. There is a lot of focus on living well until you die.
So if you are living with metastatic disease and you’re still getting treatment, that doesn’t mean you can’t be exploring, “What is hospice, what does it look like, what are my options?” Most of the larger cities have multiple hospices that either come into the home or there are private, free-standing hospices where you can go and receive care until you die. Hospice is a philosophy of care, it’s not a place, per se. So we can really do hospice wherever the person is living. And generally, I would say probably 85% of my patients would like to die at home if that’s an option. Hospice is not a 24-hour service, and so sometimes that doesn’t work, but I think finding out about what the options are can take away some of the myths about how scary this is or that I lose control if I go into hospice or I’m throwing in the flag, whatever it may be. It’s important that people really find out what it is.
If you meet with the hospice team and you’re not comfortable with the team, per se, again, ask your physician or ask your nurse coordinator, or ask a social worker that you work with if there are other options. And sometimes there’s just not a personality connection. There tends to be other options, again, in bigger cities. If you live in rural areas, you may only have one option. So hopefully there would be a connection.
But I really recommend, I start talking about it early on with my patients because it’s more difficult to take it all in and receive it in the end when you’re getting all this information. I will add that I have never, ever had a patient say to me, “I regret going into hospice.” I have heard many times, “I regret not doing this sooner.”
Jamie DePolo: You brought up somebody, a person being a parent of young children earlier. How does someone talk to a child about this? These are some pretty big and scary concepts. Are there guides that someone can turn to to help use appropriate language and appropriate concepts?
Kelly Grosklags: So probably one of the most difficult things that I can imagine is being a parent and having to leave your children. Obviously any of us that are parents would certainly be able to identify the amount of anxiety that would go into this and the amount of grief that would go into this.
First of all, we want to be very conscientious of what the child’s age is. The younger children, 8 and under, 7 and under, are going to need very simplistic terms, and they’re going to need short conversations.
The number-one rule though is that children should always be involved in the end of life. If we try to protect the child -- which is always out of good intention -- it often ends up hurting them because they can sense when there’s this secret in the house. No one is talking to them about it, but children are very perceptive of energy and they can definitely sense when things are tense, when things aren’t right. They’ll start filling in their own ideas. Some children will take it on as they must have done something wrong, or they must be naughty, and that’s why people aren’t talking to them, people are ignoring them. And obviously none of us want that.
So when the news has been given that Mommy is going to die, we have to sit down with the children. We have to pick a time that is somewhat quiet and uninterrupted, and we have to sit down with children and we have to start by asking them -- we want to make sure they have a concept of what has been going on. Yes, they know Mommy has been sick, Mom has cancer, and these are important to use these words. Cancer, sick, treatment, chemotherapy, radiation, whatever the terms are, kids can hear them. And once you get an understanding of what the child understands, then you can go from there.
And it is important, again, with the younger children, to use more brief things. That the medicine has stopped working, and Mommy is going to die. We don’t know when, but Mommy is going to die. Another thing that’s very important is to use the direct language of dying versus passing on or she’s going to go to sleep. We do not want to use euphemisms. We really want to say what is happening, death and dying, even to a younger child.
Then we want to follow up with questions about, “Do you know what that means?” There’s a really good book by Leo Buscaglia called [The Fall of Freddie the Leaf], and I mean, there’s wonderful resources online on how to talk to children. It’s really good to try and use a storybook with kids 10 and under that you can go through and show them pictures, have them ask questions, talk to them in kind of a story form.
They may initially not have questions. Teenagers may be very upset but very angry and want to leave and not want to engage. Do not force the conversation. Our role as a parent is just to provide them with the information. It’s not a one-and-done conversation, it’s something we’re going to follow up with.
We always want to alert the schools, whether it’s the school counselor, the school nurse, the principal, the teachers. We always want to alert the schools that this is going on in our family. Seek support from the child’s school. Always notify the pediatrician. The pediatrician may have some resources available right in their clinic that can support the child.
And again, it’s reassuring the child, “We’re going to have people helping us, we’re going to have people supporting us, you’re always going to be okay, you can always come and ask me questions. Your life, we’re going to try to keep it somewhat in the same structure. You’ll be able to still go to school if you want to go to school. You’ll be able to still eat your favorite foods. You’ll be able to go and do things with your friends when it’s appropriate,” and those types of things.
But the bottom line with children, and the greatest mistake made with children, is when people don’t include them. And it is all out of what we think we’re protecting them, but it actually is harmful to them. So the bottom line is involve the child to an age-appropriateness, and then if they only want to sit and have a conversation for 3 seconds, that’s fine. Our job at least is just to inform and then we’ll come back and discuss it.
Jamie DePolo: Okay. Thank you, Kelly. It just sounds so incredibly hard, but what you have said there is so helpful. I want to touch on, you’ve talked about dying a good death. What does that mean?
Kelly Grosklags: We focus very much on having a good life. I mean, we are all pretty accustomed to what that means. We bring things into our world that we enjoy, we are with the people that we love, we avoid things that cause us hurt and harm. It’s the same in death, and a good death should resemble to us what our life looked like. If we are somebody that likes it very quiet, likes nature, likes music, those types of things, we will want that in our dying. I mean, that’s what a good death to me is, is that it resembles what your good life looked like.
A good death in a physical standpoint is that your pain and your symptoms would be managed to the best of their ability. In today’s day and age, we should not have people in pain when they’re dying. We have expert hospice nurses, expert hospice physicians, and teams where the pain should not be an issue. And I think if you think about one of the things that people are scared of in the dying process, at least from what I’ve heard over the years, it’s the suffering and the pain. Again, there’s no reason why people should be in pain.
Now, a good death also means that your suffering will be addressed, and pain and suffering are different. Pain is the physical, or the symptoms that come physically from the body. Nausea, headaches, different symptoms that we might have, hands or feet being too cold, being too hot. That’s more the physicalness. The suffering is the mental anguish that people feel when they’re dying. The grief of letting go of people, the having to say goodbye, the things that they maybe have not been forgiven for, or that they have not been able to say they’re sorry. The estranged relationships that have happened. There might be anxiety or depression that’s real prevalent. We also in hospice will address those, and I think for a good death we would want all of those addressed.
Think about, if you’re listening today and you are facing the end of your life, think about what makes your life a good life. Who makes your life a good life? And that is what we want to invite in at the end with our death.
You know, we all live until we die. And I think as simplistic as that term is, it’s also profound. Because when I see people dying, I see them wanting and craving things and hoping for things in their death that they also had in their life. They may be somebody who absolutely loved animals and were very, very close to their animals. A good death to them would be that their animal would be with them or at least be available to them in the end. If they are somebody that really enjoyed a lot of family around, liked to party, liked it loud, they are likely going to be that person that wants a lot of people around, doesn’t care if there’s a lot of people in the room, always wants somebody in the house, wants people to kind of keep going on, have conversation, have dinners.
I was with a woman who always called… at 5:00, she always wanted her family to have a cocktail, and she called it the happy hour of dying. And it was just this beautiful ritual that the family did for 2 weeks straight in her honor. And she didn’t drink, but she would sit there with them, and she really enjoyed this. Well, she was a woman that always hosted the parties, always encouraged people to have a good time, and she told me to her that was a good death. That if the people in her life were happy, that of course made her happy.
So it’s a phrase that sometimes takes people back, ‘a good death,’ wow, what? Well, again, a good life should lead to a good death. And I think the conversations -- if anybody, if you hear anything today, it’s have these conversations often and early. Whether it’s with healthcare providers, your family, tell people what you want. You get one chance to do this, and if there’s ever a time -- again -- if there’s ever a time in your life when you get to be completely focused on you and what you need, it would be at the end.
One thing I would add, Jamie, is that -- and I’ve had to say this often in the hospital when I worked, especially in critical care or ICU situations where families are trying to make treatment decisions and what do we do, and I will say this a lot of times to my patients or to their caregivers -- is that the body has already decided it’s dying. That’s not necessarily something we choose. The body is dying. It’s choosing that. Where we get to be very proactive -- and yes, it’s so difficult. I mean, I have suffered great loss and death at a very young age and I know that it is… I mean, I feel the empathy for my patients and these families. They’re not necessarily easy decisions. But when the body is dying, how we actually die in terms of will it be a good death, will we be surrounded with those that we love, will it be comfortable, that’s what we get to decide.
So if people are listening today and they’re feeling concerned that they’re creating the death or they’re exacerbating the death or hastening the death, that’s absolutely not true. We are just honoring what the body is already doing. It’s just, we get to have this choice in how that’s going to look, and I think that’s where the place of love comes in for those that we love or even if you’re living with this disease. Choosing these things can truly be one of the greatest forms of love that we can show and receive.
Jamie DePolo: That’s such great words, great advice, Kelly. Thank you so much. This has been incredibly helpful, incredibly moving, and you talking about it matter-of-factly, I think, makes it less scary and easier for people then to go forward and perhaps start to have these conversations with their families.
Kelly Grosklags: You’re welcome.
Jamie DePolo: If you enjoyed listening to the Breastcancer.org podcast, please rate, review, and subscribe to it on iTunes. That helps other listeners find our content, and your support allows us to continue podcasting. Thanks.