Hospice and the Last Days

hospiceBelow is an overview of what it’s like when someone agrees to hospice care for her or his life-threatening illness. Spoiler alert: my description is intentionally optimistic.

This scenario assumes a patient will be supported by a hospice over several months. Maybe more. As I’ve written elsewhere, nearly a third of all hospice patients die within the first week. Though I understand why, I believe some wait longer than necessary to consider hospice. My hope is that a few find this “optimistic” sketch about the first (and last) days with hospice and make the hard, but equally likely good choice of seeking comfort care when a terminal illness forces you to ask . . .

How can I have the best quality of life in the last days of life?

Meeting the hospice team that will care for you and your family will be overwhelming . . .

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It’s bad enough you’re sick. But not just sick, since you have a terminal illness and your physician—maybe your friendly family doctor or a guy in a starched white lab coat who didn’t know your name without glancing at the chart—told you there are no more options for a cure.

Simply put, you are dying.

Your family is stunned. Part of you wants to protect your loved ones by claiming everything’s okay. As a family, you’ve survived recessions and job losses, teen traumas, the death of pets, major house repairs, and—among so many other events—your lazy brother who always asks for a loan. But this is different. In every crisis before, even in the worst ones, you glimpsed a silver lining.

Not now.

The doctor—friend or stranger—stopped the treatments. Apparently a hospice physician you haven’t met agreed with the prognosis: you have six months or less to live. The focus will be on comfort care rather than a cure.

A pleasant hospice nurse—let’s call him Fred—visited your hospital room not long before your discharge. Fred said he was the admitting nurse and explained some of the details.

What fun.

h42338When you were a kid, it was fun to be admitted into Disneyland, especially when you became tall enough and old enough to go on the scariest rides. When you turned eighteen, it was a proud moment to be admitted to vote. At twenty, because you had no idea what you wanted to do with your life, it was great to be admitted into the U.S. Navy and to get your life together. The Navy delivered on their promise . . . they helped you mature. Since then, your life has had purpose. Now this hospice admitting nurse says your purpose is to die.

In spite of how nice Fred the nurse is, you resent him. How dare he sit beside you—deferential, helping you complete forms—and he’s talking about your end of days.

How can Fred do this dismal kind of work?

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Soon other hospice staff knocks on your door. They make the illness and the lack of days on your calendar feel even more real. First, they all called. So many phone calls. There’s another nurse who refers to herself as your case manager. A social worker arrived to help with more forms. (How about a get-out-of-jail-free form so you can return to your regular life, and spend time hugging your grandkids rather than signing the POLST, DNR, or Living Will crap?)

Nope, not gonna happen.

The damned social worker, with steady eye contact and a willingness to answer your spouse’s questions, is another reminder of how serious this is. You regret saying yes to meeting the chaplain, but then she turns out to be an okay person and you discover you once lived in the same town years ago. Not only that, she doesn’t tell you what to believe, but asks questions that allow you to talk about your frustration . . . and your anger. You actually tell her she can visit again.

There was a home health aide who said she’d help you with a bath. Are you kidding? You told her No! until she suggested that maybe you could start with a simple sponge bath. You could tell her to stop whenever you wanted. She was so gentle! And it felt good, after those awful days in the hospital, to lie back and let someone clean you while you got a chance to brag about your children.

Your hospice “team” (that’s what they called themselves) were all nice. They were careful with what they said, and didn’t argue if you complained . . .

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But in those first days you hated them.

Your spouse complained about the phone ringing all the time.

Your kids felt like they had to schedule time with you, squeezing in between a nurse and a social worker.

You resisted the hospital bed. No one can make you give up your California king mattress!

You resented the stupidly named “bedside commode.” How humiliating!

You never liked taking pills. They were for sick people!

When the social worker asked about veteran’s benefits, you told her you misplaced the paperwork a long time ago.

But days went by.

Someone from hospice called to ask if you’d want a volunteer. They could be with you while your spouse ran errands (and, frankly, just got away from the four walls of home). Reluctantly, you agreed. A few days later on a sunny afternoon, your spouse did get a break. Bonus: the volunteer didn’t just sit with you, but you swapped lies about your military service. Since you’d been in the Navy, the only downside was the volunteer happened to be a Marine. Marines always got seasick on the ships! But it was the first of several great visits.

You and your kids started calling the home health aide by her name. Riya—whose parents immigrated from India—was so sweet, often waiting for you to finish an old navy tale before she left.

And it was amazing the social worker—his name was Juan by the way, and he has a newborn child—made headway with the VA office and you’re getting military benefits you never thought you had. Better still, some of those benefits will continue for your spouse after you die.

After you die. Now death is easier to talk about.

The hospice doctor, who visited your home to help manage your pain, answered questions about the cancer. She helped you understand why there could be no more treatments. For the first time, you felt like you and your spouse had made the right decisions about care.

When the nurse starting placing the pills in a pillbox, and explained things so carefully, what had been a chore became a simpler routine for your caregivers.

You and your oldest child had a wonderful talk with the chaplain. She’d never been able to tell you how much she resented that you’d worked such long hours when she was growing up. You were able to forgive each other for the years of stilted silence. You told your son you were proud of him . . . why had you never said that aloud before?

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. . . you held hands and reminisced

Best of all, in those last days, with the hospice team you knew by name, and who knew your hurts and hopes, your spouse became a spouse again. Because of that shitty cancer, it seemed you were only a patient and your spouse a caregiver. But now, late at night, with the house quiet, you held hands and reminisced. You recalled dreams that came true, and risks that had been worth taking.

As your body weakened, your soul seemed to soar. There were tender moments and even laughter. New memories were made that, after a lot of tears, would become treasured family stories.

In the last days, there was quality of life.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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Comments

  1. My first experience with hospice was with a friend from church. She’d been sick for several years with cancer. No children and her husband had died a few years before she started feeling sick. When she was first sick, her niece took her to appointments and treatments. Her neighbors helped out as did members of the church. Over the years fewer and fewer people were able to help. She became more and more isolated. The cancer came back several times and finally the doctor recommended hospice. I was called to come see her and I was impressed by the homey setting and she looked so serene. She said she had so many nice people helping her with everything. In the previous year, she’d only seen the people she’d hired to help her, the minister and a few church members and had felt so isolated and alone. Now, she said she had a bunch of new friends and although she knew she was dying, she could not imagine a better place to be when the time came. She died a few weeks after she arrived in hospice surrounded by her friends, new and old. She was a good person and died with dignity thanks to hospice. Sh
    I did not find your description to be optimistic, I found it spot on.

    • Wow! Thanks for sharing this account of your friend.

      However, I will keep my qualifying word “optimistic” in the essay. Every experience with hospice will be different for every patient.

      But, obviously, I believe that if a patient and his or her family enters hospice earlier they will likely have a “better” time and journey. The first days are unsettling. But, in time, things settle down and the new schedule can bring benefits. Your friend’s story reveals one of those: new friends.

  2. Larry, this essay brought back so many memories of my uncle’s last days/weeks with us. Without making it sound like a broad brush paints the same picture for every hospice patient, this seems to be true of not only my uncle’s story, but so many people who’ve shared their experiences with hospice with me since his death.

    My uncle, a very proud man, served in the Army Air Corps (known after WWII as the Air Force), and he loved to tell his stories of his time in the service. In fact, towards his last weeks, he shared more of those stories than any others in his life; very similar to what you shared in this essay. And like the person in your essay, my uncle was at first reluctant to talk to a social worker, didn’t want a health aide in his apartment, would never use “that commode,” and didn’t want to talk about taking all those medications. But once he got settled back in his apartment (after his discharge from the hospital), he began to accept these more and more.

    And like you described in this story, he forgave his oldest son (my cousin), and his son forgave him. They talked for the first time in years, it was his last week of life, but they talked. And they talked. And their relationship was transformed. And I don’t believe that would have happened if not for hospice.

    My question to you is this story you laid out more common than we (lay people) understand? While not exact, does this story have a common theme to it with most (if not all) hospice patients you encounter?

    I’m asking because, as you know, we can preach all we want, but when something happens in our own lives, all bets are off! As much as I’d like to think my level of compassion (and hopefully empathy) is up there with the best of them, when my uncle was getting angry at all the people calling and sitting with him, I was becoming frustrated. And when I saw him frustrated and confused, I wanted to grab him and tell him this was for his own good – it was in his best interest.

    Had I known his response and his confusion, and even his reluctance, was “normal” (whatever normal means to someone being admitted into hospice) I might have been able to see things clearer and be even more present with him. While all resources are directed towards the patient in the very begging (as they should be!), if we – the family – were given some idea of what we could expect from his reaction and response, we might be in a better position to offer that compassion and empathy we’re called to share. Maybe it should natural to us, but as family members we’re scared and confused, and even angry ourselves.

    Thank you, Larry. Thank you once again for sharing a story that becomes a lesson for all of us.

    And I’m not sure if I mentioned this to you before today, but thank you also for recommending a book that you read – that has to do with this subject. You kinda/sorta gave it a review in one of your posts last year and your endorsement of it convinced me to go out and buy it. I read it, and then Elissa read it – and then we talked about it (and the subject matter in it) You were absolutely correct in your assessment of it. “Being Mortal,” by Dr. Atul Gawande, was one of the most honest books I’ve read and the way it was written is a testament to those who do the work you do. Thank you for suggesting it to those of us who follow you on Facebook!

    • Thanks for taking the time and sharing about your uncle, Rusty.

      In answering your question, I tried to give an honest thumbnail sketch about what the hospice experience is like for many (many!) of the patients I’ve known directly and heard about indirectly. Hospice can first feel like an intrusion for a person and their family, but the staff will often become “part” of the family during the weeks/months together. That positive “transition” truly does happen–though in different ways for different situations–quite a bit.

      Nonetheless, I would never sugarcoat the potential. Hospices aren’t perfect, some staff (‘cuz they are human) simply don’t match well with a family, and every terminal illness means there will be times of crisis that tests the patience of staff, patients, and caregivers.

      Again, thanks for your words and wisdom. Take care!

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