How do you make sense of someone dying? The only way I know is to put it into some context so that, if possible, some good can come of it.
Some of you may have known about my dad’s Parkinson’s disease. He’s had a fairly rapid decline over the past four months, and now he’s rapidly declining again. He has been on home hospice for the past three months. He has had a difficult time with the loss of strength and function, and my mother has had a difficult time with it, too. Despite our best efforts, they worked together to keep the caregivers from being able to do much for him because he wanted her to care for him, and she wanted to be the one to do it.
We are in the Willard Walker Hospice Home in Fayetteville. He came in last Wednesday for respite but was changed to general inpatient care today. He has not been able to sit up without support for several weeks, and he hasn’t been able to drink anything without choking to some degree. Mom came with him last Wednesday because she has always been there for him. Today they changed his medications to be given through a subcutaneous button. He has been very short of breath and has been taking a tiny dose of morphine to help with the shortness of breath over the past few days, and he really doesn’t want to drink anything anymore. Now he won’t choke when they give it.
He is sleeping mostly and occasionally wakes, thinking he needs to void. He has a catheter, so once he’s reassured about that, he goes back to sleep. He seems comfortable; things are quiet and calm; therefore, Mom isn’t stressed and is okay with what is happening. She’s sitting in the adjoining room, reading and napping.
I’m remembering what it was like when my grandmother died 38 years ago. She was found to be in a diabetic coma and was transported to the hospital, where they started an IV and kept her hydrated, even knowing she would never wake. She was 90. Because of the fluids, she was in the hospital for two weeks before she died, and my dad or my mother stayed at the hospital with her during all that time. The nurses and the doctor were very kind, and they kept that saline going all the time, for what reason I don’t know, because it clearly was not giving her any relief, and it was really only causing her lungs to fill with fluid and her catheter bag to constantly need to be emptied. I don’t know if my dad thought she would wake up at some point or what, but it was clearly stated that the physician did not expect her to ever regain consciousness. I sat with her the last night so my parents could go home and get some rest. I promised I would call them as soon as it looked like she was going. She had Cheyne-Stokes respirations (breath-holding followed by rapid blowing off of CO2, then more breath-holding) all that evening. She was gurgling and had loud, coarse breath sounds. The periods of breath-holding became longer and longer, and I finally called them around 5:00 in the morning. She died a couple of hours later, the day after my dad’s 52nd birthday.
My dad is breathing that way now. He’s a tough old bird, so he may go on like this for a few days, or he may just go quickly. Who knows? He is very comfortable, not gurgling like my grandmother, and he is ready to go. His lungs are not full of fluid because he does not have an IV giving him unnecessary fluids that his failing heart can no longer pump efficiently.
So here’s how I make sense of this. Use it as a witness so others can know. We’re all going to die. Death is not the enemy if you are a child of God; suffering is. Death is a doorway that we don’t have the right to force open or keep closed. It is just as wrong to prolong someone’s death as it is to hasten it.
Everyone needs to know that hospice can keep people comfortable at home and then comfortable in the hospice home when a different type of symptom management is needed. My dad is not hungry or thirsty. He hasn’t been hungry or thirsty for several months, and he has only been drinking a little Coke for the taste of it and drinking Ensure Plus to appease my mom because she thought he needed it. There were signals that he was shutting down, and hospice was called in to help us keep him comfortable at home.
People worry that someone is “starving” or “dying of thirst” when they no longer want to eat or drink. Starvation is a form of torture; it occurs when someone wants food or needs food (or water), and someone else withholds it as a form of punishment. Losing your appetite for food or drink is not starvation; it is the natural occurrence prior to dying, and it can start weeks or months before the actual event of dying. It is God’s way of keeping the body comfortable when it is no longer able to chew, swallow, digest, or eliminate safely and efficiently. When someone is actively dying, there is no need for the gut to use up its last little bit of energy by processing something that is not necessary. There is no need for someone to be uncomfortable when their bowel can no longer move stool through the colon. There is no need for someone to be coughing and spluttering because everything is going down the wrong pipe (swallowing is a highly coordinated activity, and we lose that ability just like we lose the ability to stand or walk). There is no need for someone to be short of breath because their lungs are full of fluid from an IV. God is gracious to us to keep us comfortable as we are dying, and we screw it up, thinking we know best.
Please don’t be hesitant to call in hospice. They will evaluate the patient, and if he is appropriate for hospice, they will offer their services. If he is not appropriate for hospice, there is no charge for the evaluation. Appropriateness is dependent on several things, and a change in the direction of care goals is a requirement. If there are still goals for “cure,” then hospice will recognize that and gently stay away. If there are no further goals for cure, but there are goals for comfort, hospice will offer their services.
Please don’t worry or fret when your loved one is no longer hungry or thirsty and doesn’t want to eat or drink. I’m not talking about the temporary loss of appetite due to a sudden illness, but the waving away of food when it is offered to a person with a life-limiting illness; someone who has been eating or drinking because it is expected of them but they really don’t enjoy it anymore. If you offer it, and they don’t want it, it’s not torture, and they are not suffering because of it.
I’ve known all of this as a physician, and I’ve tried to comfort and reassure family members of hospice patients over the years. I suspected it when I sat with my grandmother, gurgling away for days before I was a physician. Now I know it as a child of a dying parent. There are several similarities between how my grandmother died and how my father is dying. They both were/are old, they both had/have long-standing disease, they both were with people who loved them and cared for them as they died/are dying. They both knew where they were going. But there is a difference. Years ago, the nurse came in several times a day to hang a new IV bag and empty the catheter bag. The doctor rounded once a day to console my father as he sat in a hospital room, listening to my grandmother’s breathing. My grandmother’s breathing was labored and loud. Today, the nurse and aide come in and check on my dad regularly to make sure he is comfortable. They offer medication as needed. The hospice doctor came today to make sure that the medications were doing what they needed to be doing to keep my dad comfortable. They check on my mother. My parents are at peace. My dad is comfortable, dry, and breathing quietly. I will have to look over to see when he goes.
Kimberly Chapman is a family physician.
