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Topic: End of Life Q&A Blog Series

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: Dec 22, 2017 06:40AM

Moderators wrote:

Thinking about the end of life can be one of the hardest things anyone can do. But for many people, it can also take some pressure off to start thinking about what you want now so that you can focus on what matters the most to you later.

In this blog series, experts provide guidance on the complex questions that come up when we're thinking about the end of life.

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Dec 22, 2017 06:41AM - edited Dec 22, 2017 06:42AM by Moderators

How do I talk to my husband about whether he'd be more comfortable with me dying at home or in the hospital?

Q: How do I talk to my husband about whether he'd be more comfortable with me dying at home or in the hospital, if we have a choice? I think I'd prefer dying at home if I had a choice, but I want to take his feelings into consideration. All of our family is on the other side of the country; it would be a very tough thing for him to come home to if I died while he was at work. I don't even know how to bring up the topic. Looking at his face while we discussed the Advanced Directive, DNR [Do Not Resuscitate], and POLST [Physician Orders for Life-Sustaining Treatment] papers was hard enough. I know that he'll tell me that he wants me to do whatever makes me most comfortable.

A: With couples or families, I often see that everybody is trying to protect everybody else. Sometimes patients tend to assume that the other person can't handle the hard topics, and once that assumption is made, they don't bring it up. They think it's just going to be too difficult. But I have found that there can be many pleasant surprises in these conversations, where both parties discover that each wanted to bring it up, but again, everybody is protecting everybody else.

I encourage you to be very open and not spend a lot of energy trying to protect people, because that drains the limited energy you already have. If you can't name your concerns, if you're struggling to bring it up, I recommend sending an email: "Here are some things I'm thinking about. Can we set up a time to talk about this?" That is a good way to allow the person sending it to get their thoughts put together, and then the loved one receiving it has some time to think about it.

Of course, the people you love — your husband, especially, in this case — are going to have sad reactions. You're anticipating a loss and people are going to be sad, but this isn't necessarily a bad thing. This is something to be expected with these conversations. You really have to make your needs known and not back down when you see your loved one's reaction. It's sad in the moment, but it is worse not to talk about it.

As far as making the decision about where to die, in this case Plan A could be to die at home, but there also has to be a Plan B and C, such as going to a hospice facility. To die at home you would need a care team involved, have friends involved, have neighbors helping. Some of my patients also worry, "Will my husband or partner ever be comfortable in the home after I'm gone, or are they always going to think about my death?" I can't necessarily decide that for families, but when it comes down to it, if people can die at home, it tends to be a better death, both for the family and for the person who is dying. Our hope is that it would be beautiful and peaceful, a time of connection, where you can really experience intimacy in the greatest form. Having worked with many grieving families, I can say that in most cases they were glad they could have the person at home. What makes them sad is now living in the home without that person.

Sometimes, though, emotionally or physically, the family can't handle having their loved one die at home. They just need to be the husband or the partner or the daughter, and not be the nurse, the cook, the chaplain, you know? And I always tell families it takes around 12 people a day to care for someone in hospice, so it is something to think about. These conversations have to be open because even if the patient wants to be at home, the people caring for them might not feel like they can do that. This doesn't mean they don't love the person.

I also have some patients say they don't want to die at home, that it's not as serene at home for them. Maybe there are a lot of comings and goings, maybe a lot of younger kids around. They might have a lot of extended family living with them and they don't feel like they would be able to be at peace. So they purposely choose to go somewhere else. Now, I will say that patients need to be really honest with themselves: Is this what I really want or am I trying to take care of everyone else in making this decision? I really want people to be empowered when they're making these end-of-life decisions and not make assumptions about what would be best for everyone else.

There is no getting around the fact that you can't avoid all the pain for people in grief. Grief is the price that is paid for loving people. When you're making decisions about where you want to die, and how you want this to look, it's important to realize you can't necessarily cushion all the blows. It's just not realistic to think that way. It's so tender and loving when the dying person wants to help their loved ones avoid pain, but there really is no getting around it. When I see my patients making decisions and spending a lot of energy on what they hope will happen for others after they are gone, I really try to bring them back to the now: "Let's think about what you want in the now for your dying."

And finally, always remember that plans can change. It's never too early to start talking about what you want for the end of life, and decisions can change over time. There is so much pressure to make the right decision, but you're trying to plan for a stage of life you haven't been through before. If you and your husband or family make a plan and then it doesn't feel right, it's not set in stone. You can change it.

— Kelly Grosklags, L.I.C.S.W., B.C.D.

Kelly Grosklags

For nearly 25 years, Kelly Grosklags 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 Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly.

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Dec 22, 2017 06:42AM Moderators wrote:

How can I figure out when is the right time to stop actively treating the cancer?

Q: How can I figure out when is the right time to stop actively treating the cancer?

A: I don't know that I have ever met somebody with metastatic breast cancer who hasn't done incredible research, sought second and third opinions, consulted with others with the same diagnosis. Whether it's starting a clinical trial or taking a week off, these tend to be very thoughtful decisions. And that's also true when someone decides to stop treatment.

In this day and age, it is more difficult to stop treatment because you have more options now versus 20 years ago. There often is "one more thing we can try." But just because it's available doesn't mean you should do it, right? That is an important thing to remember, because any treatment can come with a variety of quality-of-life issues.

One of the things I encourage people to do early on when they meet their oncologist is to say: "I need to know that if you don't feel like treatment is working any longer, you're going to be able to have an honest conversation with me, and that whatever you would recommend for me at that time would be what you'd recommend for somebody you love." This might be a conversation that happens years before someone actually ends up stopping treatment.

Care goals have to be something you continuously check in with your healthcare team about. You also have to listen to your body. When the body is saying things like, "I'm getting sicker from this treatment, I'm not enjoying my life as much from this, I'm in more pain," you and your team have to evaluate whether it is the disease or the treatment. There are a lot of reasons why people keep treating, and I can respect a lot of those reasons, but generally why people stop treatment is because the benefit does not outweigh the burden any longer. They are sicker and despite everything they've tried, the disease continues to progress. They know that the decision to stop could cause a lot of pain and suffering for those they love, but that's not their intent.

You may need to turn off the noise around you and listen within. Find some time with your oncologist or trusted person to talk about this if your body tells you this isn't working any more, or you feel worse when you're on treatment. Everybody has his or her own definition of what quality living is. Some people are okay with just being sedentary on the couch, as long as there are people around. For others, if they can't be active and do the things they want to do, they are not interested in continuing that life.

If your healthcare team can't talk about these things, then you have to find a different team or somebody who can, because it really is their job to be able to discuss all that the person needs to consider. One of the stages of metastatic cancer is dying. When I teach medical students and fellows, I recommend that the phrase "There is nothing more we can do for you" go out the door and never come back. There is a lot more we can keep doing for you when you decide to stop cancer treatment. The plan then shifts to comfort care, whether that be hospice, palliative care, whatever you decide, but it's important that you don't think of stopping treatment as getting to the edge of the cliff and falling off. Stopping the cancer treatments is a part of care. It can be a time when many oncologists shine with their patients, in the end making sure all comfort measures are taken care of.

So when you make the decision, you're transitioning over to this other part of care. You're not falling off the cliff, you're just stepping onto another stone. That's so important because one of the reasons I think people have a hard time stopping treatment is they're worried they're going to be abandoned. It puts them into another unknown category, right? So again, when people say, "How do I know when it's time?" I say you have to be quiet enough, listen within.

But it's not a judgment call for me or anyone else to make. It's totally individual. But I do think it's really important that people, every 6 months or so, check in with themselves and their healthcare team when they are in treatment. Make sure you're making the right decision for you, and not making assumptions on behalf of your family or trying to protect them. Again, ask your oncologist or care team, "Would you recommend this treatment for someone you love?" Periodically you have to reevaluate care goals and quality of life and say, "I need to rely on you as my physician to tell me when you don't think medically this is in my best interest anymore."

When you stop treatment, it's important then to have a really aggressive care plan about how the psychological, the physical, and all the other issues that arise are going to be addressed. And that sometimes will help people before they stop treatment to have already had that discussion. But I think for most people they know. They just know when it's time.

— Kelly Grosklags, L.I.C.S.W., B.C.D.

Kelly Grosklags

For nearly 25 years, Kelly Grosklags 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 Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly.

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Dec 22, 2017 06:43AM Moderators wrote:

How can I make sure I will be comfortable and pain-free at the end of life, both for my benefit and that of my family?

Q: How can I make sure I will be comfortable and pain-free at the end of life, both for my benefit and that of my family?

A: Hospice care is the answer, whether you receive that at home or in a hospice facility. The guidelines for hospice are 6 months or less. Well, it would be a joy if people could have at least 6 months of quality time in hospice. There is a lot of end-of-life work that can happen with patients and with families. Hospice is not a place per se; it's a philosophy of care that helps the patient and the family.

If you are really worried about end-of-life pain, particularly if you have had a lot of pain with the cancer, you might be fearing that it will get worse, or you can't imagine how it could get any worse. In this day and age, there is no reason anyone should die in pain. With all that we have available to us, all the different specialties with hospice and palliative care, there is no reason this should ever happen.

Now, there is a tradeoff with alertness, and sometimes people aren't as coherent when they're taking pain medication. What I will tell people is that toward the end you will probably be less aware, but likely still able to hear what's going on, although not necessarily able to respond. So, you may feel like you're kind of in and out of consciousness. There may be times you want to pull back on the medication so you can be more alert and present with your family. I had one patient who told me, "My granddaughter is coming home from college today and I want to have some good conversation with her, so I'm willing to be in a little more discomfort today so I can be with her."

Hospice will help you get the right resources set up. Generally, we want to get people on scheduled pain meds in hospice, because pain is something we want to stay ahead of, but there can be some trial and error and even daily adjustments.

I have had lovely moments with people in hospice, because the world gets very small. They can have these beautiful moments, sitting on their couch, feeling comfortable, very relaxed, and just really enjoying a cup of tea with the people they love. I've heard often from people, "I wish I didn't worry so much about this time, because it's going better than I thought it would go."

So if you're worried, ask to have a consult with the hospice team even before you sign up for it. Say, "Here are my concerns. What do you have that's available? How would this be treated?" This isn't the time to worry about addiction. You should be comfortable no matter what. If and when the time comes that you can't swallow medications, there are so many other ways to give it: in the cheek, under the tongue, rectally. Some of the things that we have available today are just remarkable. If you're dying at home under hospice care, hospice workers will teach the family and caregivers how to do it. The hospice nurse may have to visit one, two, three times a week until the pain is managed well, but they are absolutely, 100% the experts on pain management.

They also can help patients and families be creative and think outside the box. There is reiki, energy work, body work, and light massage that is so profound at the end of life and can really help with symptom management. These can help you stay a little more alert and not have to rely so much on the medication. Of course, there isn't anything wrong with needing medication. It's just a fine dance between being comfortable and being alert.

The overall philosophy and the intention of hospice, you know, is that a good life should have a good death. What I say to families is, "You've given this person such a good life. Now, you know, we have to give them a good death." And if you feel safe and loved and comfortable, in the end, that's pretty much what matters, you know? Really, it's amazing how none of the rest of it matters.

— Kelly Grosklags, L.I.C.S.W., B.C.D.

Kelly Grosklags

For nearly 25 years, Kelly Grosklags 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 Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly.

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Oct 11, 2020 10:43PM arolsson wrote:

I do not want to live at home because I am single and the fact that I have terminal cancer onlyl seems to upset my teenagers. They help less instead of more, have difficulty when I get upset and I frankly don't feel comfortable here. Unfortunately hospice options here are very limited, people are urged to die at home. Any advice?

Dx 8/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, 5/5 nodes, ER-/PR-, HER2+ Surgery Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy Halaven (eribulin)

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