Hospice Girl Friday | ‘When a Child is Terminally Ill’

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

My mom called me over the weekend to tell me about Kelly, her manager’s daughter. “She finally died, after twenty round of chemo and 5 surgeries,” my mom said, with an audible exhale full of sadness. “At one point they even removed one of her kidneys. Poor little thing.”

I had never met Kelly, but I felt like I had since my mom and I had talked about her so much over the two years since Kelly had been diagnosed with neuroblastoma, a dangerous yet common childhood cancer. That was right after her third birthday and right around the time most three-year-olds are learning to catch a ball and ask important questions like ‘Why is the sky blue?’

My mom thought that Bob, her manager, avoided confrontation at any cost, and she was frustrated by the way some of her co-workers seemed to take advantage of him on a regular basis. But when Bob came back from a long absence and told his team that little Kelly had cancer, my mom changed her attitude. After that, whenever my mom complained about work all I had to say was “Yes, but his daughter has cancer,” and her frustrations about Bob melted away into compassion.

“How is Kelly doing these days?” I’d ask.

“She’s on a new chemo that is making her sick, but Bob said they are going to stick with it. I hope they’re not chasing rainbows.”

“Mom, I can’t imagine what they’re going through. It must be impossibly difficult for everyone.”

“You’re probably right, but I just feel so bad for the little girl. She is sick all of the time from the chemo treatments. They keep taking her up to New York for surgeries. When does she get to be a kid?”

“I think Bob and his wife are trying to make sure she gets to be a kid. And a teenager. And a grown-up. How does a mother give up on her child’s future? You never would have been able to when we were little. You wouldn’t even now that we’re all grown.”

“Of course I wouldn’t,” my mom said without hesitation. “I just feel so badly for that little girl.”

There is a natural order to life: we are supposed to outlive our parents. It was my mother who first pointed that out to me when my friend Leslie was told there were no more treatments available to try to beat her cancer. Leslie’s parents were with her when she died a month shy of her 46th birthday. They are still outliving her.

I do not have kids so I know I will never understand how a parent might feel at any and every stage of a child’s life. But I have watched my own parents’ hearts soar with every high and break with every low that one of my brothers or I experienced. No one in my family has ever had to go through what Bob and his wife went through with Kelly (knock on wood), but I asked my brother David what he would have done if one of his now-grown sons was diagnosed with cancer at a young age. Would he let his child have some quality of life, or would he chase a cure?

“I would pursue every possible treatment, making any sacrifice necessary, even if it meant risking my own health and well-being,” David said. “Not doing so would not even enter my mind. Your thought of providing some quality of life is a consideration, but not at the expense of finding a long term solution or cure.”

David’s answer did not surprise me. My guess is my other brothers, who have two kids each, would say the same.

My hospice is for adults only so I have no experience with parents choosing–or not choosing–hospice care for their children. Still, most of the patients I see did not choose comfort care for themselves. They are in hospice because they exhausted all curative treatments available to them. Some patients have accepted their fates (not all loved ones have, however). Others are in denial or angry at the world or their god or their bodies for being so unfair. Modern medicine has done wonders to keep us alive longer than ever before, but now we are so ill-prepared to face death I often wonder if I would choose to forgo treatments that might prolong my life yet make me so sick I would not enjoy living, or if I would prefer to make the most of whatever time I might have left.

If I think I would have trouble making that decision for myself, I cannot begin to understand how Kelly’s parents could make any other decision than the one they did for their little girl. It’s a decision they will sadly have to live with–without her–for the rest of their lives.

Previous post: Discussing Your Advanced Medical Directive Next post: Getting too close to a terminal patient

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

Hospice Girl Friday | ‘Discussing Your Advanced Medical Directive’

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

I knew the in-patient unit would be busy on Christmas so I signed on to take an extra shift. There were already five patients when I got there and a sixth was expected. Around noon, Holly Gold was rolled into the hospice accompanied by two of her daughters. One of them was fighting back tears and unable to respond when I said hello. The other introduced herself as Joanne, who told me she held power of attorney for her mother’s healthcare and that their mother needed pain relief immediately.

“She is suffering from heart failure and has been comfortable at home,” Joanne said. Her words came out quickly, probably powered by pent up anxiety. “Last night she took a bad turn and hasn’t stopped moaning and crying. She needs to be admitted. Is the doctor here?” Her eyes darted around as she looked for a medical professional. I don’t think my volunteer badge offered the kind of comfort she needed.

Many family members panic when they first arrive at the hospice because patients usually come here in some sort of physical distress. About half are already receiving hospice care at home so their family members are familiar with how it works, but Mrs. Gold and her daughters were new to hospice. The doctor had warned me that they were very concerned about their beloved mother. “The family is very close,” she had said, and she asked me to convey a calming confidence when they arrived.

“The doctor called right before you walked in,” I said to Joanne. “She wanted me to tell you she will be here within 30 minutes. In the meanwhile, we are going to get your mother settled. The nurses are in with her right now. I promise you, she’s in good hands.”

Joanne and her sister both thanked me, but I could tell Joanne was still nervous by the way she fired out questions. “Don’t we need two doctors to verify that my mother has less than six months to live? Do we have to wait until that happens to start treatment? Do you need a copy of my mother’s Advance Medical Directive? I have it here.” When she stopped to take a deep breath, I jumped in. I pointed toward the sofas with an arm outstretched to indicate we were going to walk in that direction.

“The doctor has already admitted your mother. I will take a copy of whatever paperwork you have, and someone from the hospice team will be here shortly to go through the rest of the admission process,” I said as I sat down on one of the sofas. Joanne and her sister followed my lead.

As we talked, several people walked into the hospice and came over to where we were sitting. Joanne introduced them as two more sisters and the patient’s nine grandchildren. She explained they were a very close family and had traveled from all over the States to be together over the winter holiday break. I went back to my desk to photocopy Joanna’s papers while she led a family meeting in the living room area. She explained that her mother left very specific instructions about the kind of medical treatments she did and did not want. Everyone nodded along as though they already knew about Mrs. Gold’s directive. Some of the grandchildren asked questions. Others offered comfort to their emotional family members. In spite of their grief, they were kind to each other the way I wish all of our patients’ families could be, the way I hope my brothers and I will be when our turn comes to deal with our parents.

Because most patients come to our hospice in crisis–that is the purpose our in-patient unit serves–they and their family members are often unprepared for the reality of end-of-life care. Whatever family dynamic exists continues to play out in the hospice. My friend Daisy says ‘As we are in one thing, we are in all things.’ I would agree and also add that crisis brings out who we really are, not who we hope we are or who we pretend to be. Which brings me back to me and my family.

After my friend Leslie died–in hospice, in crisis–I sat down with my parents and asked them if they had any plans for end-of-life care. We had never discussed the topic as a family, and I wanted to make sure they received the kind of treatment they wanted. More importantly, I wanted to make sure that my three brothers and I were not left to fight about the kind of healthcare our parents would or should receive if they were not able to speak for themselves. I assured my parents, who raised four strong-willed, very different children, that we would be together but we needed them to do us and themselves a big favor by taking the burden of such enormous decisions out of our hands. They understood because they have witnessed our many disagreements over the years.

I now have the same paperwork for my parents that Joanne Gold had for her mother. The forms articulate my parents wishes and put me in charge of carrying out those wishes if my parents can not. My brothers and I might not be as close as the Gold children and grandchildren, but we will be united on our parents’ side when the time comes for us to say goodbye to them.

Previous post: The Loner Next post: When a Child is Terminally Ill

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

Hospice Girl Friday | ‘The Things I Never Knew’

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Recently my husband and I attended the funeral of Frank, a former community band mate of ours who died from brain cancer earlier this year. Frank’s wife also plays in the band and the four of us would often chat as we walked to our cars after our weekly rehearsals. We weren’t close friends and never saw each other socially outside of band, but after I saw Frank struggle to walk into rehearsal one evening I reached out to Betty and offered to come over to sit with Frank while she ran errands or just took a break from her 24/7 caregiving. Frank dozed the entire time my husband, Jim, and I sat with him but woke up to say goodbye just as we were leaving. Frank passed away the following week. He was 64.

Frank retired after 20 years in the navy and wanted to be inurned in Arlington National Cemetery, the hallowed and hauntingly beautiful burial ground a few miles from where we live. Because of his rank, Frank was sent off with full military honors that included an escort platoon, a colors team, a military band, and a horse-drawn caisson that carried Frank to his final resting place. Jim and I were honored to be there and surprised by what we learned about Frank’s life and legacy from his eulogists.

We knew Frank was a submariner, but we did not know that he retired as a commander. After he retired, he worked with a defense agency to create training and tools currently used by soldiers fighting today’s wars. We also knew that that he and Betty liked to tell stories, but we did not know that they once won the National Storytelling Network’s Oracle Award. And we did not know that Frank was in the process of writing several stories of his own before cancer robbed him of his words, and that Tom Clancy had dedicated one of his blockbuster books to him.

Jim and I were silent as our motorcade slowly traveled from the chapel to Frank’s final resting place. The air was unseasonably warm; the sky threatened to rain, but never did. I watched the clouds race by as though they were reminding us how quickly time goes. Then Jim voiced what I had been thinking.

“I wish I talked to Frank more than I did at band rehearsal.”

“Me too,” I said.

“I don’t know why I didn’t,” my husband said. “I would have loved to talk to him about his military career.”

“And I wish I had gone to hear him perform with his storytelling troupe,” I said.

“Why didn’t we?” my husband asked.

As Jim’s question hung in the air between, us I thought about the time–soon after I became a hospice volunteer–that I read an obituary of a long-term patient. A nurse had clipped it out of the paper and tacked it to the bulletin board in our conference room. The patient lived in our hospice for several months, but I never knew that she was once a college professor, or that she played the piano and was a gourmet cook. Of course the nurse already knew that about the patient because they talked on a daily basis and, more importantly, the nurse cared enough to ask.

Back then I preferred to keep my distance from the patients I met because I was still coping with the pain of losing my dear friend Leslie and did not want to get close to anyone I knew I would have to mourn before long. Also, since most patients stayed in our hospice unit for only a few days before they went home or passed away, I had rationalized that there was not enough time to forge any kind of meaningful relationship. Sometimes my fear of grief still causes me to think and act like that.

With Frank, however, there were plenty of opportunities, and I regret that I decided long ago that other than band, he and I had nothing in common, so I kept my distance. I use that rationalization too often to mitigate loss, grief, and pain–the inevitable payoffs that come from investing emotionally in personal relationships.

As a hospice volunteer, I am reminded every week how fleeting this life is–something I thought I knew and knew better than many others. But as I rode in Frank’s funeral procession, grateful for what I learned about him that day, I wished I hadn’t taken this long to realize that getting to know someone like Frank, or any of my hospice patients, would only enrich my life no matter how little we might have in common or how much time we might have together.

Regret never fades, but in the long run, the memories of shared experiences and stories outlive any grief. I know that now. Frank knew that because he believed in the value of a good story. I learned at his funeral that he also believed there is an appropriate Gilbert & Sullivan quote for every occasion–something else I wish I had known about him. Betty chose this perfectly apt one from The Yeoman of the Guard to end Frank’s memorial service:

Is life a boon?
If so, it must befall
That Death, whene’er he call,
Must call too soon.

Rest in peace, my friend.

Previous post: A Case for Comfort Animals Next post: The Power of Compassion

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

Hospice Girl Friday | ‘Survivor’s Guilt’

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Before my friend Leslie died, I thought hospice was for old people with cancer. According to the Hospice Foundation of America, approximately two-thirds of hospice patients are over the age of 65, which means that one-third are younger than 65. And while many are diagnosed with cancer, I’ve seen just as many patients at my hospice with pulmonary or heart disease, neurological disorders, Alzheimer’s, AIDS, or complications from any number of health issues.

When I check the census at the beginning of each shift I get a quick overview of the current patients: their names, diagnoses, ages, and dates of admission. Also listed for each patient is the name and relationship of the main point of contact. All of this information is helpful as I prepare to make my rounds. I always look at the ages of the patients first, hoping to find that they are older than I am–preferably much older. That way I won’t have to think about my survivor’s guilt–how it could just as easily be me instead of them. But every week there is at least one patient my age or younger (I am 53), and every once in a while, all of the patients are. Those days are the toughest.

One recent Friday there were five patients: a 52-year-old woman with lung cancer; a 33-year-old woman in a diabetes-related coma; a 46-year-old man with HIV/AIDS; a 49-year-old man with end stage kidney disease; and a 51-year-old woman with breast cancer. I felt my stomach start to roil when I read the census. I would have preferred to stay at the volunteer desk and not see any patients for my entire shift, but I swallowed my survivor fear and made my rounds.

My first stop was room five, the woman in a coma. Her mother was there and said they were both fine for the moment so I moved on to the 46-year-old man in room six. He seemed to be sleeping so I tip-toed out and walked into the room of the 52-year-old woman with advanced lung cancer.

Her name was Laura, and she was sitting up in bed when I walked in. She was rocking back and forth with her palms on her lower back and watching The View on her small flat-screen TV. I read in the volunteer notes that she used to be a dancer; she looked tall, lean, and muscular, but she was also bald and jaundiced from her cancer and chemo treatments. If I didn’t already know her age, I would have guessed she was in her 70s. Cancer–or the treatment–does that sometimes. I noted a pile of peanut M&M packets on the nightstand next to her untouched breakfast tray.

“Peanut M&Ms are my favorite candy,” I said to break the ice after I introduced myself. Focusing fully on the patient was difficult because I kept thinking: She’s younger than I am. I could be in that bed.

Laura glanced over at the stash. “My boyfriend keeps bringing those because he knows I love them. I just don’t have much of an appetite anymore.”

I wanted to have more of a conversation with her, and asking about her boyfriend would have been my next move, but when a patient mentions some sort of physical symptom like a loss of appetite, it’s important to try to find out if he or she is experiencing any other discomfort. The nurses visit as often as they can, but a patient’s comfort level can change minute-to-minute so I always try to help by passing along any time-sensitive observations.

“How are you feeling otherwise? Are you comfortable?”

“Pretty much,” Laura said. “My back still really hurts.”

That explained the rocking. Back pain is a common complaint with lung cancer patients, but should be fairly easy to fix so I said, “I’m sorry to hear that. I’ll tell your nurse.”

“Why are you sorry?” she asked. “It’s not your fault. I’m the one who smoked.” She said this without the slightest note of self-pity or anger.

“Fair enough,” I said, trying to sound as neutral as she did. My ‘sorry’ was meant to be empathetic instead of sympathetic, but I knew to follow her lead and then drop it. There was a pause between us, and before I could stop it, a feeling of relief rushed in along with the thought: Maybe I wouldn’t be in that bed after all because I don’t smoke.

On the days when the patients are younger than I am, I marvel at the randomness with which we move through life, as though we’re all playing one big round of musical chairs, dancing around one moment and eliminated from the game the next.

On those same days I also feel a deeper empathy for the patients and their loved ones, and I’ve often sensed the same from the hospice nurses and doctors. I know that cancer, diabetes, HIV, and other diseases do not discriminate by age, yet sometimes I wish they did. I see too many hospice patients who just seem too young to die–possibly because I feel like I am too young to die–and it feels unfair that they could not find a chair when the music stopped. Then again, I have no idea what age is “old enough” to die, so I continue to work through my survivor fear and do my best to help all of the patients in my hospice find some comfort at the end of their too-short lives.

Previous post: The Power of Listening Next post: Coming soon

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

Hospice Girl Friday | Coming Home to Say Goodbye

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

Our volunteer supervisor sent out an urgent request on a Tuesday: ‘We have a rather unusual situation in the IPU tomorrow, and I’m looking for someone who can cover the 12-3 shift…we will receive a patient via air transport from Atlanta. He is from this area and his parents would like to have mechanical ventilation stopped closer to home.’

I could not recall a patient on a ventilator in the six years that I have been a volunteer so I did not know what to expect. I only knew that help was needed. I responded immediately:‘Yes, I am available.’

My supervisor sent more information: The patient was a 27-year-old man being treated for cancer. Chemotherapy paralyzed him and he was put on life-support. The family could not find a local hospital willing to admit him and eventually they were referred to our hospice.

On Friday mornings the inpatient unit is quiet with only a few staff taking care of patients and paperwork. When I arrived for my special Wednesday shift, there were additional nurses and higher-level administrators preparing for the arrival of the patient and his family. I saw small teams of people discussing and rehearsing the plan for the day, carefully reviewing checklists like pilots before a flight. The atmosphere was tense.

My supervisor was standing with the regularly scheduled volunteer at the front desk. I walked over, said hello and asked for an update.

“The plane is delayed,” she said. “We’re expecting the patient around 2 p.m. His father is traveling with him. His mother and siblings should be here any minute.”

“What is our role?” I asked, nodding my head toward the other volunteer.

“One of you will need to man the desk and help out with the rest of the patients,” she said. “The other might be called on to assist the family when they arrive. We’re not exactly sure what to expect.”

I was about to say ‘I’ll help with the family’ when I heard the other volunteer say it first. I was disappointed, as though I were now less important. I wanted to be a part of the experience, not a spectator, and then I remembered that the other patients needed support too.

Just as we finished our conversation, the front door opened and a woman and two teenage girls walked in. The woman was tall, slim, and looked like she was in her mid-40s. She walked up to the desk, smiled and said she was the patient’s mother. She then introduced her daughters and explained that two older sons were on their way from the college they attended together. She was calm and composed, as if she were checking in for a doctor’s appointment. I said hello as the other volunteer walked around the desk to greet them and offer a tour of the facility, which the mother accepted. Her daughters shuffled behind her.

A little after 2 p.m., the patient arrived. As he was wheeled in on a stretcher I was surprised to see that he was conscious and alert. I had to catch my breath as I registered that the decision to remove the ventilator might have been his.

I know the patients I see are terminal and have opted out of curative medicine and heroic measures. For them the dying process takes a natural course as the body shuts down, and hospice care keeps them comfortable during that time. While this young man was just as eligible for hospice care as anyone else, I was moved by his choice to remove his life support, and wondered how his parents—or any parents, for that matter—would cope with that decision.

Once I regained my composure I looked up and saw the patient’s father talking to the mother. He was older, heavier, and used a cane to walk. His sons must have slipped in quietly, because the patient’s four siblings were now sitting on the matching sofas, each pinned to a corner like they were trying to disappear into the cushions. The father broke away and went into the patient’s room. The mother sat down in a chair between the two sofas with her back to me.

“Okay so we’re here to say goodbye to Michael,” she said, scanning the sofas for a connection. No one looked up, but the younger girl started to cry. She hugged herself.

“I need you to be strong and remember we are a family. We will get through this together,” the mother continued as she looked from child to child. Still no eye contact. The crying turned into sobbing. The mother kept talking.

“No one wants Michael to suffer, right? This is his decision and we have to respect it. He is never going to get better, remember, he has cancer.” The sobbing continued as the girl covered her face with her hands. I walked over and placed a box of tissues next to her. The other three children sat as rigid as the furniture.

I hurried back to my desk to try to separate myself from their pain, but the girl’s sobbing was inescapable. I turned toward the nurses and other hospice staff and saw that we were all fighting back tears. None of us spoke while we listened to Michael’s mother try to console her children.

About 20 minutes later another volunteer came in to relieve me. I did not know when Michael’s procedure would begin, but I was grateful to be leaving before it did. (I learned that the ventilator was removed that evening; Michael passed away about 18 hours later.) I was surprised and disappointed that the situation and the family’s grief were too much for me to bear. I thought I was stronger and more able to step outside of my own emotions to help others deal with theirs.

I called my mother on my way home from the hospice. She’s always said that losing a child is every parent’s nightmare, and I wanted to tell her that even though I am not a parent, I finally understand what she means. She told me how precious life is and how lucky we are—my parents, brothers, and I are all alive and well (knock on wood). That day, just hearing my mom’s voice soothed me, as it always has. I hope Michael’s parents, brothers, and sisters find a way to comfort each other, too.

Previous post: Just Being There Next post: The Power of Listening

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

Hospice Girl Friday | ‘Receiving Thanks’

Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

“Gratitude can transform common days into thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings.” —William Arthur Ward

My hospice has its own wing in a building that also houses a large nursing home facility. Volunteers sit at a desk near the entrance to the unit and are the first point of contact for people who call or visit patients.

At the beginning of my shift on the day after Valentine’s Day a man walked in gripping a small bunch of long-stem yellow and red roses. He was probably in his late 60s, was heavy set, bald, and wore dress slacks and a sport coat. The flowers were wrapped in a wet paper towel and looked like he randomly pulled them from a larger arrangement. Instead of stopping at my desk or pausing to say hello, he walked to the back of the unit where the nurses and chaplain were eating lunch around one of the tables in the living room area. I watched the man hand the roses to one of the nurses.

“Thank you for taking care of my brother,” he said, putting the flowers on the table. Then he turned and hurried back toward the door. “It was a pleasure doing business with you,” he said over his shoulder. As he passed me, he pulled a white handkerchief out of his trouser pocket and dabbed his eyes.

I stood up and walked over to the nurse to ask her about what just happened.

“ ‘It was a pleasure doing business with you’? Who was that?”

“That was Mr. Jakes’* brother,” she said.

I remembered Mr. Jakes from the previous week. Brain cancer.

The nurse continued. “He flew in from Chicago the day before Mr. Jakes died. He wasn’t very nice to me, and I don’t really want these flowers,” she said, stabbing at her salad with her fork. “I think he feels badly about being so rude.”

“Maybe he does. And maybe he truly is grateful for the way you took such good care of Mr. Jakes. After all, he didn’t have to come back in,” I said.

“Fair enough,” she said. But I could tell she didn’t want to continue the conversation so I went back to my desk. Five minutes later, another man walked in. He was around 40 years old, tall, broad-shouldered, and he wore blue jeans, a ball cap, and work boots. His green sweatshirt had a ‘Johnson’s Florist’ logo over his heart. I’m used to signing for flowers, but he wasn’t carrying any.

“Hi, there. How can I help you?” I said.

He took off his hat, walked up to me and introduced himself. “Good afternoon. My name is Mike, and I’ve brought over some roses for the staff of the home and hospice. I left them by the main entrance and wanted to let you know before they’re all gone.”

“That is so sweet,” I said. “I’ll tell the nurses. I’m not staff. I’m just a volunteer.”

“You be sure to get some too. There’s plenty for everybody.”

“Are these leftover from yesterday?” I asked.

“Yes ma’am. And we want to share them with the staff here.”

Just then both of the nurses on shift walked over. I introduced them to Mike. After saying hello, he took a long look around and said, “My mom was in this hospice and everyone was so nice to her and my family. I’ve never forgotten it.”

“When was she here?” one of the nurses asked.

“Oh a long time ago. She’s been gone 25 years now.” Then he told us again where the roses were and left. The nurses followed him out and a few moments later came back in, each carrying a vase bulging with a dozen long-stem red roses.

I’ve always found Valentine’s Day too commercial, and long ago I asked my husband not to buy flowers for me. I wouldn’t appreciate the gesture, as roses seem like a waste of money, especially since they don’t last more than a day or two before drooping over with broken necks. But Mike came in again, and this time he was carrying an open box of long-stem roses that looked like they were made of dark crimson velvet. Each one was nearly the size of a tennis ball. I started to reconsider my position.

Mike handed me the box. “I wasn’t sure if you were allowed to leave your post,” he said, “so I brought you these. Please take them home and enjoy them, and thank you for everything you do here.”

“Thank you, Mike. They’re beautiful,” I said, looking at the bouquet and feeling like had I just won the Miss America pageant.

When I got home I put the flowers in the biggest vase I could find and set it in the middle of my kitchen table where they bloomed and thrived for almost two weeks. I used to think that the main focus of hospice was the patient, but those roses reminded me that the family members and caregivers also benefit, so much so that they come back to say thank you. Sometimes, as with Mike, they come back years later. And sometimes, as with Mr. Jakes, the thank you is clunky and possibly a veiled apology. But in each case they make sure they delivered a message of gratitude to the hospice staff and volunteers.

*Names have been changed to protect patient privacy

Previous post: These Four Walls Next post: Lessons from Room 4

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.