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 . . .
+ + +
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.
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.
When 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?
+ + +
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 . . .
+ + +
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?
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.)by