How is Hospice a Good Thing?

She looked intelligent, tired, strong, defiant, and wounded. She opened the front door enough to let me see her while tightly guarding the entrance. She said, “My friend told me hospice was a blessing – a ‘good’ thing. How in God’s name can my husband needing Hospice be a ‘good’ thing!”

I hear that question often. There is no good answer, because the truth is you can’t possibly know what you need until you’ve been through it. Her husband was only 49 years old with a very aggressive brain tumor. He was a vibrant, handsome, loving father, and a self-made man with a thriving business. A year ago, while ordering a sandwich with his daughter, he suddenly could not understand the words on the menu. A week later, he had difficulty walking, then diagnosis was made, treatment took place, and after a long year, he made the decision to talk about Hospice care.

We were still standing in the doorway as she waited for an answer to her question. Somehow the idea of asking me in was acceptance. I did not move. Her eyes stayed fixed on mine.

“Needing Hospice is not a blessing,” I said quietly. One of her eyebrows lifted a bit, and she tilted her head.

“When managing the disease is too much to do alone, when you’re done with aggressive treatment, you need help to manage the symptoms, and you want to spend every minute making the most of each day – then it’s time to talk about Hospice. Needing us is not the blessing. Having access to us is. Having us there with you, walking these next months with you so we can help you, your children, and family navigate what is happening and what is to come, then supporting you for a year after as you grieve, remember, and rebuild – that is the blessing.”

She stared at me for what seemed like an hour. Her eyes filled with tears and so did mine. She opened the door and motioned me in.

He was at the kitchen table as we came in. “I suppose you heard that,” she said to him and smiled. “Sorry if I was rude,” she said to me. He tried to talk but struggled. It’s called expressive aphasia. You know what you want to say, but the words make no sense. He smiled and put his hand on mine.

Hi Greg, I’m Tami I said to him. Do you want me to talk to you and your wife about Hospice services today I asked. His hand was still on mine. He smiled and nodded yes.

We began.

For three months Greg was able to stay home with his family. We were able to get the oldest kids home from college, help them keep their Christmas traditions, and work with his mother and father so that everyone was included and enjoyed precious time together. His symptoms were well managed.

About the fourth month we had what we call a crisis morning. The family was exhausted, and the idea of Greg dying at home was concerning to the family who planned to remain in the house after he passed. He needed intensive management to control new seizure activity.

We transferred Greg to our inpatient unit. He had around the clock expert care, and we were able to work with our spiritual and bereavement teams to help his children, his wife, and his parents come to peace with his changing condition.

Greg’s death was peaceful and gentle. We helped the family plan his memorial, and they remained successfully under our bereavement team’s protective wing for a year following his death.

When terminal illness invades, we all ask ourselves the same questions, and agonize over the choices that we have made on someone’s behalf because we love them. Because we want to do everything possible. Because we want them to fight.

We have so many incredible medical options available to us with new treatments and trials unfolding every day. And while it is wonderful to have so many treatment options, when a person is more miserable with treatment then they are with the actual disease, it’s time to re-address the options.

Every patient knows when they have had enough. They want peace. They want control. They want the dignity of choice. When a patient decides to keep going beyond that time, it has little to do with what they really want. At that point, be assured, they are doing it for their loved ones who are begging for them not to stop. Hospice is not giving up. I have never had a patient say, “I wish I had waited longer to call you.” I have had many say, “Oh my God, I wish I had called you sooner.”

I do this for a living, and when it was time to care for my own mother at home she chose Holy Family, and even though I was not her hospice nurse, I was her caregiver. I made promises to her as her daughter about care choices, that as a nurse I might have questioned. Her daughter promised those things to her – not her daughter the nurse. My job was to make sure her wishes were respected. I kept those promises even though there were moments, as a clinician, that I struggled with some of those decisions.

Hospice is giving the gift of a dignified choice. It was painful when my mother decided she wanted to stop treatment, but it was robbing her of her strength and comfort with no promise of a cure.

Hospice care is a treatment choice. We do have patients who choose hospice care and stabilize. We have patients who start hospice and then change their minds to pursue treatment. That’s always an option. A patient can revoke the benefit and choose it again when they are ready. So how do you know when to call hospice?

Ask yourself: who is the patient? What kind of spirit do they have? How do they want to spend the time they have left? Those are the real questions. Choose a hospice provider that you trust. Gather information, ask the questions you have on your mind, and remember that the most loving thing anyone can do for their loved one is to walk the journey with them and respect their choices with every step.