Hospice care at home

She died of heart failure in the early hours of July 21, 2020, at the age of 92. “I have no strength left. That was not the case a week ago. I think I’m going to die.” That’s what she said to me 15 days ago. She wanted to spend her last days at home. Today, more than 80 percent of The French population shares my mother’s desire. Yet 60 percent of French people die in hospitals. “Waiting in the hallway of the emergency room for hours? For what? I just want to go in peace and suffer less.” Mother said.
For the last week of my mother’s life, I lived at her house. After a few frustrating days, she died “naturally” in her own bed. No obvious pain, surrounded by family. Mom was a member of death with Dignity. She had her own thoughts on medical issues, such as whether to receive treatment and how to take medication, and wrote them down in black and white. She and I often talk about whether she has the courage to kill herself if life becomes unbearable. This topic is very important to her and to me.
My mother’s attitude towards death gave me great courage to accompany her to death. I learned a lot from such an experience. But I never thought I would be so alone. I discovered that France (including medical-rich Paris) has done surprisingly little to make it easier for those who wish to die at home. It seems to me that just a few changes can make the process of dying at home go more smoothly.
For months my mother had been very weak and eating less and less. In early July, her health took a turn for the worse. Politics, poetry and music, which had been the light of her life, were of no interest to her. My family had planned to go on a road trip in early August. Fifteen days earlier, my mother’s family doctor had given her the green light to travel. Yet with each passing day we become more convinced that a long journey is impossible.
Death loitered not far away, slowly closing in on her. My mother told me that the shadow of death hung over her every day. I decided to live in her home if necessary and call in hospice care to help her through the final stages of her life. The painful journey began. Nothing could be more painful than the arrival of National Day on July 14. On this day, France enters the long summer holiday season, and the whole country seems to be dormant.
| | on July 12, Friday

I decided to give my mother a “dignified death.” This is the first day OF my decision. I found that I had no clue what TO do next. I don’t know how to be with someone who’s dying. Besides, is death really coming? Maybe mom is just tired and will recover soon. By doing this, did I hasten her death? But then again, what’s wrong with me doing that? Mother’s eyes are fading. She’s been telling me for months that she’s lived too long, that she doesn’t want to live like this anymore.
These questions crossed my mind, but I had no time to think about them. Mom’s family doctor is taking a week off next week. The family doctor was on vacation, his replacement doctor was on vacation, and they didn’t find a replacement for the replacement doctor. I have to call the clinic. Otherwise, mom might end up in the hospital.

“Hello, doctor? My mother is on her deathbed. I’d like to hire a hospice resident. Can you tell me what procedures I need to go through?” I soon discovered that there was something magical about the words “terminally ill”. If I uttered the words in a calm, firm tone, the doctors immediately changed their tune: they stopped staring with worry at the results of the blood tests and offering advice they didn’t believe themselves.
So is the substitute doctor on the phone. He immediately changed his tone and told me that he would do everything he could to help me submit my request for hospice care to One Heart before leaving work that evening. One Mind is a health organisation that aims to “help people with serious illnesses stay where they want to be without having to travel”.
In the afternoon, the doctor on duty contacted me and told me that he had handed in the application form to Concentric association. ‘I had to call the emergency center and explain my needs — that my mother should die at home,’ he said. ‘Then the emergency center would contact One Heart and ask it to send hospice care workers.’ The substitute’s words reassured me and convinced me that Mom was dying.
On July 13, | | on Saturday

I had just returned to Paris from the provinces that afternoon when I called the emergency services. In the evening, the paramedics came, tired and impatient. I guess I’m exhausted from the weekend demands. Frowning, he scanned mom’s recent biochemical reports, examined her briefly, said she had some kind of lung disease, and prescribed antibiotics. That’s all I don’t want her to eat.
As I walked him to the door, I uttered the “magic spell” : “She’s dying. She doesn’t want to be hospitalized.” Then I asked the only question I cared about: “What else do I have to do to get One Mind to send hospice care workers to my mom’s house?” The man said unequivocally, “Tomorrow? The National Day? And on a Sunday? Don’t want to. You can call the association on Monday morning. They tell you what to do next.” “So I’m calling them instead of you?” He didn’t answer my question. Then I realized he probably didn’t know any more than I did.
On July 14, | | on Sunday

On the evening of National Day, mother exhibited extreme anxiety. She has been in bed since morning and can’t eat anything. Suddenly she seemed to have energy again, calling me up. She was so frightened and angry that she almost screamed, “I know I’m going to die. But not this way! Not so dead! You promised me you’d help me. But you didn’t do anything. You lie to me!!!!!!! Everyone lied to me! I don’t want to be like this anymore! I can’t take it anymore. I…… I want to jump off a building!”
My mother could not stand on her legs, so there was little risk of jumping, but I could not see her in such pain. I comforted her by lying down again, assuring her that I would help her, but that it just needed some time. I gave her half an anti-anxiety pill and played soft music. My mother calmed down, but I couldn’t. She’s right. We can’t do this anymore. I must find a way to make my impending death less terrible.
On July 15, | | on Monday

I’ve been calling Concentric all morning. The person on the other end of the line was polite and attentive. But in the back-and-forth conversations, IT quickly became clear that there was nothing they could do about family doctors being on leave and patients running out of time.

Finally, they said the last thing I wanted to hear: “You need to call the emergency services again.” Two days ago, the clinic’s substitute doctor had also said that only doctors outside concentric could arrange hospice care for patients. So the paramedics who came to our door on Saturday were for nothing! What a waste of time! “Don’t forget to tell the paramedics that you don’t need first aid. You have a terminal patient who needs hospice care.” One of the staff told me that the doctor would call me again this afternoon.
It was afternoon. I picked up the phone and called emergency services. “You have a terminally ill patient in your home who doesn’t need emergency care? Please hold the line while I connect you with someone.” Once, twice, three times, I told the same story over and over again to different staff members. “Someone will be here in two hours,” the last staff member told me briskly. I was relieved. It’s finally official.
But when I saw the young girl ringing the doorbell, I was discouraged again. She looked in a hurry. No one had told her what she was about to face. And this time, the “magic spell” didn’t work. She blanched at the word “terminally ill”. “Er… What can I do for you? ‘ “She stammered. Is she afraid I’m going to euthanize her? Too wrapped up in my own emotions to comfort her, I coolly asked her to visit my mother.

After less than a minute of frantic examination, she wrote out a prescription for “palliative care”. Oral care, subcutaneous fluids… She doesn’t know anything. She can’t be any help. I can’t stand it, but I don’t know what to do. One Heart said I’d get a call from a doctor. Can he help me?
At four o ‘clock in the afternoon, the phone rang. It’s the doctor. I explained my situation for the umpteenth time: Mom was dying, she wasn’t in the hospital, the family doctor was on vacation, we needed help… Then he thought for a moment and said, “Why don’t you let her get hospice care?” I was dumbfounded. This from a hospice care worker?
Controlling my anger, I said, “Doctor, I was wondering how many days it takes to apply for hospice care.” Again, I heard the unthinkable: “At least four to five days.” But mom’s not gonna make it that long. I asked one last question, one that had been nagging me: “If my mother is having trouble breathing, can you arrange to send us a ventilator?” The doctor, though impatient, seemed to want to help me. He said casually, “Then you don’t need a ventilator, you need morphine!”
As I hung up, it finally dawned on me that we were on our own. Of course, we also received some outside support. In the days that followed, countless people came to our aid, including my parents’ loyal maid, the caregivers who had cared for them a year earlier, and the professional and responsible nurses at the street clinic. But what about the doctors who know? What about hospice care professionals? None of them gave me any help.
The first thing we need is morphine. I have a doctor friend who knows a lot about my family. He saved me.
Half an hour later, I arrived at his clinic. He handed me an envelope containing several morphine tablets. I asked him, is it legal? He smiled and said nothing. When I got home, I told my mother THAT I could relieve her pain and anxiety. She didn’t say anything, but she was breathing better. She even smiled when relatives came to visit her at night.
| | Tuesday, July 16

One day, I wrote this sentence in my black notebook: Calm morning, breathing well. Admittedly, such moments of peace are rare. For more than a year, a nurse from the neighborhood clinic came every three days to bandage mom’s leg. She has an ulcer on her leg. When the nurse came in the morning, she immediately realized it was no longer a skin problem.
I suggest the nurse call One Mind. After communication, the association agreed to let the neighborhood clinic send a nurse to visit the mother every day to perform oral care and monitor her physical condition.
The nurse was loudly on the phone in mother’s room. I lay down next to my mother and asked her if she knew what had happened. “I know it.” “She said firmly, and closed her eyes. Is it true? She looked very calm. That’s what I hope.
| | Thursday July 18

Time seemed to pass slowly, and it seemed to pass quickly. She was sleeping longer and longer, refusing food and drinking almost no water. Her bodily functions are slowly declining. Time is drawing near. This morning, the nurse noticed that mom’s nails had turned blue. “Only a few days.” She told me carefully. And I, too, was slowly learning to quiet my mother: to speak when to speak, to shut up when to shut up; Massage her sore parts; Help her get up for a drink of water. I’m used to it.
Still, I felt fear inside: What if she suddenly had trouble breathing? What about massive bleeding? Are we gonna put her in the hospital? After all, I’m not a hospice specialist. This fear did not completely dissipate until the last day.
On July 20, | | on Saturday

That day I had my first real palliative care class from a nurse at the clinic down the block. She told me she had worked in the hospice ward for more than a year. She sat at the head of the bed and greeted her mother, stroking her hair. I immediately noticed the difference between her and the other nurses. She explained to me, “As death approaches, the departing must mourn for themselves. For them, this is a very painful moment. But if they accept this moment, then everything will be calm. This is what people call ‘sublimation’.”
Then she showed me how to perform oral care. She picked up the soaked gauze and cotton swabs and made small, slow, calm movements. “Every three hours.” “She suggested. She lifted the sheet and placed a long pillow under it to secure her mother’s back so she could curl up on her side. She then tucked a pillow between her mother’s legs as if in a yoga class.
In this process, mother calmly, breathing smooth. She remained in this state until the evening. Late at night, I kissed her gently on the cheek and said, “Good night, my dear mother. See you tomorrow.”
| | Sunday July 21

At 3:00 a.m., I came to see her. When I got to the door, I knew. My mother’s posture was exactly the same as the night before, her expression still relaxed and unchanged. Only, she wasn’t breathing anymore. I can’t believe it. I knew exactly what “the silence of death” was.

Spending time at home with my mother has left me with painful memories and a new perspective on life.

I was prepared for this moment. But I hadn’t anticipated how lonely the voyage would be. I wouldn’t have thought it was the week my family doctor was off; Nor would IT have occurred to me that my doctor friend would be offering me help that was neither entirely legal nor entirely illegal.
If I had known all this, would I have made the same decision? Probably not. If I didn’t have all the support, if something happened, my mom would probably die in the emergency room. That’s the last thing we want. But we were lucky. And I don’t regret my decision. Spending time at home with my mother has left me with painful memories and a new perspective on life. But at the same time, it was sweet. There were always guests and laughter. There were no medical equipment, but there were kittens dozing at the end of the bed. When she was awake, she felt the world she knew and knew that we were always there for her.
In the fall, I contacted Tongxin again. In fact, they do a good job. They give priority to needy solitary patients, serving an average of 330 patients per year for an average of 70 days per patient. So why didn’t Concentric help us more? The reason is that they can’t handle emergencies. By the time we contacted them, it was too late. I should have contacted them in the spring. Mom’s situation is not complicated. If I had contacted the association earlier, my mother’s gp and the association staff might have been able to negotiate an appropriate end-of-life plan.
To “enjoy” hospice care, one must be fully aware of it. Some parents dare not mention this topic for fear of scaring their children. Some children also dare not discuss with their parents, for fear of triggering their parents’ anxiety. Now I understand why 60 percent of French people die in hospitals, and why France has one of the lowest “home death rates” in Europe.
Isn’t that how people used to die at home? Lying in your own bed, surrounded by friends and family, getting weaker and weaker until death takes you away. Today, unlike in the past, we have simple and effective medical treatments that can alleviate the suffering of people at home, but we lack the political will, financial support and large-scale advocacy to do so.