6 Myths About Hospice Care

Contrary to what many believe, hospice is about living, not dying. “Get the facts before you need them. Hospice makes a hard reality much easier for everyone,” says Kurt Kazanowski, M.S.N., hospice expert and author of A Son’s Journey: Taking Care of Mom and Dad. Understand hospice care before you or a loved one needs it with Kazanowski’s quick guide:

Myth: Hospice means giving up.
Truth: While hospice focuses on comfort (palliative) care, not a cure, patients don’t have to be ready to die before getting the care they need or deserve. And patients can leave hospice at any time if their health improves or if they want to pursue
a cure.

Myth: Hospice patients can’t go into the hospital.
Truth: A hospice patient always has the choice to go to the hospital.

Myth: It’s only for the elderly.
Truth: Hospice is for anyone with a terminal illness and a life expectancy of six months or less.

Myth: The family must sign a Do Not Resuscitate (DNR) order.
Truth: A patient can receive hospice care without signing a DNR. Hospices cannot discriminate against patients because of any advance directive choices.

Myth: Only a doctor can speak to hospice administrators.
Truth: Patients and families can choose to talk with a hospice ­anytime. However, a doctor’s order is required to admit a patient to hospice.

Myth: It’s only for people who don’t need a high level of care.
Truth: Level of care required by the patient is not a factor in admission to hospice. The medical and nursing professionals in hospice are required to have advanced training in ­technologies associated with ­palliative care.

This article is featured in the May/June 2017 issue of The Saturday Evening Post. Subscribe to the magazine for more art, inspiring stories, fiction, humor, and features from our archives. 

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 | 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.