Telling hospital patients about dying

When should hospital doctors tell patients that they're dying and what the death will be like?

Some readers of my story in April about caring for my husband at home as he died of brain cancer said they wished they had gotten more information about the process of dying when their loved ones were hospitalized. Families of patients who are dying in hospitals may get far less information about death, they said, than those have help from hospice at home.

Below, Carol Hill writes about her father's death from cancer. You can also read Michelle Scolnick's moving description of her mother's death from multiple myeloma on the web at www.philly.com/caregiving

Next week, we'll print some comments about children and hospice. If you have other issues you'd like to raise, contact me at sburling@phillynews.com or 215 854 4944.

   - Stacey Burling

Dear Stacey,

My father died two years ago after a battle with an "unknown cancer." Like you, most of my family had little experience with helping someone die at home. Fortunately, I had experience helping my father-in-law and a good friend die with dignity.

I thought that I knew a thing or two about the process, but I was wrong. Every sickness is different and the progression of death different for everyone. However, I still have raw feelings about the wonderful health care workers at the [hospital]. While they gave my father excellent care and were open and accessible to our family, I do not think they were always honest, particularly at the end of his stay in the hospital.

My dad was a smoker; however, he did not have lung cancer. In the end his lungs gave out. The hospital tested and tested and knew he had cancer, but could not identify what type. My dad's lungs began filling with fluid in May. By August he was dead.

My major complaint is that the doctors at the hospital were not honest with us, in my opinion. After staying in the hospital for almost a month, he was discharged. The doctors told us that they had taken the tube out. He was terminal. They recommended rehab. However, NO ONE had the courage to be honest enough to tell us just how bad he was or when he would die. They told my mother and me that he could have up to six months. My father died four days later.

When I recommended hospice to my mother, she told me that my father had "months" and that she was not ready for it. He went to a rehab center, but my dad threw a fit because he wanted to be at our family home.

Fortunately, a good friend is a hospice employee and I was able to get my dad home the following day. Everything was set up. He died two days later. One of my brothers and one of my sisters were unable to get home in time to be with him. We were devastated by his quick death. . .

Unfortunately, I didn't know enough about lung disease to understand the consequences of taking the draining tube out. I didn't know the right questions to ask. . . I don't intend to have this happen with my mother. I will be ready to push and demand answers, if I need them.

Thank you for your articles. Continue to write them, please.

Carol Hill, Bordentown, NJ

Dear Ms. Burling:

First, please accept my sincere condolences on the loss of your husband. I give you so much credit for writing these articles, which will help so many people. Your desire to help others deal with the situation you found yourself in is a testament, I think, to your strength.

In my opinion, your articles should be required reading for all healthcare professionals, so that they can be aware of how little information they share with the families of people who are dying from cancer. I would have given anything to have had this information three years ago, when my mother passed away from multiple myeloma at the age of 60. At the time, my daughter was three years old, and my husband was finishing law school. My mother, who was divorced and lived alone, had been diagnosed in 2003. My husband or I had accompanied my mother to every doctor's appointment; we researched treatment methods and medications, asked question after question, but never received any information from any medical professional about how we would really know when the end was near.

There was one doctor's visit at which I asked what people with multiple myeloma really die of, because I truly did not understand what (other than the vague word "complication") we needed to prepare for. I was told that some people die of an infection, while others hemorrhage (multiple myeloma is a blood cancer). That was the extent of the information I had. And so when my mother called early on the morning of my husband's law school graduation to say that she could not attend the ceremony because she had developed a fever, I was concerned. But after being hospitalized for a week, she went home, and her doctors said that it was all right for her to be alone as long as a family member checked in on her every day. She was very independent and refused to have anyone sleep at her house unless the doctors said that that would be absolutely necessary - and they didn't.

The fever was, of course, caused by an infection, but IV antibiotics treated it. However, as a result of the repeated IV infusions, she developed what the doctors referred to as fluid overload. So the morning came when I walked into my mother's house and thought that she looked "puffy," but she laughed it away. The next day I arrived, prepared to take her to her next doctor's appointment and then spend the day with her, and her breathing was alarmingly labored. She was adamant that I not call an ambulance because she was headed to the doctor anyway. All she needed was to get there, she said, and her doctor would know what to do. An ambulance would take her to the emergency room, and she did not want to go there. Again, not having any true idea of what I was up against, I called my husband and asked him for help in getting her to the hospital for her appointment. Her doctor took one look at her and had her admitted immediately.

In the end, one complication led to another, and between the middle of May and the end of June, she was hospitalized four times, for a week each time. Yet each time, the doctors discharged her. Each time, we asked if we should make sure that someone was with her round the clock. Each time, the doctors said that that was not necessary. So, afraid to push my mother too hard (and she was still refusing to have anyone stay overnight), we did the best we could, never knowing that everything we were seeing really was the beginning of the dying process.

I spent the days with my mother, and my sister would stop by in the evenings. There were days when my mother was angry and frustrated because she found it difficult to even fix herself a bowl of cereal and carry it from the counter to the table. And then there was the day when she was hungry for pizza, and I went up to the pizza place at the corner to get it. It was the last lunch we shared.

A few days after Father's Day, my husband took my daughter over to visit her grandmom. He wanted to give me a break, so he suggested that I stay home. He came home saying that my mother seemed tired, and she didn't seem to have as much interest in my daughter's visit as she normally did. The next day, my mother had a doctor's appointment and her usual blood and platelet transfusions (at that point, she was receiving transfusions at least twice a week). I had to go to an introductory meeting with my daughter's camp counselor, so my sister took the day off from work to take my mother to the hospital. Later that day, my sister called to say that she had just taken my mother home and that my mother was extremely tired. She decided to stay at the house while my mother slept. A few hours later, my sister called again, concerned because she thought my mother just "didn't seem right." I went over to the house to find that my mother had a 103-degree fever and was very confused. I knew that we had to get her to the hospital, but she refused to go. I had no choice but to call for an ambulance.

A police officer arrived before the ambulance did. He came into my mother's bedroom. I explained the situation, and he asked her if she wanted to go to the hospital. She said no. He informed me that because the patient had refused treatment, he would cancel the ambulance, and he called the dispatcher to say that an ambulance was no longer needed. Thank goodness the ambulance was already pulling up outside the house. The paramedics came in, and the officer informed them that they could leave. Desperate, I told them that they were needed upstairs. They asked my mother if she wanted to go to the hospital, and again, she said no. Fortunately, though, they also asked her other questions - like what her name was and what day of the week it was. And when she gave incorrect answers, they recognized that she was not in a position to make decisions on her own.

That evening, the ambulance took my mother to the hospital for the last time. She was in the hospital for a week before she passed away.

I knew that she had not wanted to die in the hospital, and I still feel guilty that she did not die at home. But the word "hospice" had never been mentioned to us until my mother had entered this period of spending time in and out of the hospital for increasingly serious complications. She had never made any arrangements and had never wanted to give up hope, and by the time a nurse at the cancer treatment center told us that we could look into hospice as an option, things had already progressed too far. When I spoke to a social worker at the hospital during that last hospitalization, she checked with my mother's doctor and informed me that the doctor would not give permission for my mother to be moved at that point. He was afraid that she would die while being transported home.

So my story is different from those of many of the people in your articles. I was not a round-the-clock caregiver for my mother at the very end. I was at the hospital around the clock, but I was not the one who was responsible for moving her, administering medications, and feeding her. Yet because my mother spent days at home in between her hospitalizations, I did do a lot of caregiving. And I truly would have welcomed the information that your articles offered. Health-care professionals need to be reminded that the average person does not have the knowledge that they have. Nobody told me that when my mother was at home, spending hours sleeping and refusing to eat, that this was not just the effects of medication. Nobody told me that when I spent the night in a chair next to my mother's hospital bed, my mother would spend the entire night sitting up, moving around, being completely unable to relax and sleep. Nobody told us that we should not try to entice her to eat the foods that we thought would boost her strength (which we did, all the time). Nobody told us, the night before she died, that there actually was a simple explanation for the rattling noise we heard as she breathed. It wouldn't have changed the circumstances, of course. But I would have welcomed as much information as I could get during that time.

I think that whether a person is dying at home or in the hospital, family members should be given as much information as possible, in as much detail as they request. Yes, in the end my mother probably did die from an infection. But there was so much surrounding that simple word "infection" - so much that we did not know to recognize. For me, as horrible as those last days would have been under any circumstances, they would have been just a tiny bit easier if I had had any idea of what to expect. When I think back, I always feel that I can only describe that period as a horror. There were just so many things that I did not anticipate and that I was unprepared for. While people may be fearful or uncomfortable learning the details of death, I can say - as someone who lived through watching a loved one die of cancer - that I wish I had had the information that your articles offered. You have done a great service for other people who are in, or may someday be in, the position you were, and I am sure that your husband would be very proud to know that you are helping your readers in this way.

Sincerely,

Michelle Scolnick, Wayne, Pa.