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, LICSW, BCD
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. If you visit Kelly’s Facebook page, you can choose “Like” to receive regular updates and opportunities for interaction. Kelly is also the author of the book A Comforted Heart: An oncology psychotherapist's perspective on finding meaning and hope during illness and loss.