In The End: Quality of Life in the Hospice Care Setting

by Natalie Ernecoff

The hospital is a maze. White coats buzz everywhere. Are you invisible? It certainly seems like it when you stop in the middle of the hallway to look for signs. Arrows? A familiar face? Anything, really.

You walk into your dad’s room. 908. You have to look at the number because you can’t actually recognize him. He is swollen. His face is barely visible behind the breathing tubes, drips, and wires. If he were awake, would he be able to move his arms? Probably not. He would get tangled in the wires.

It doesn’t matter, you suppose. He hasn’t been awake for two weeks. Does this seem like a lot of effort to keep someone alive, but barely? He is barely alive. Does this count as a life? That’s a question for someone above your pay grade. You just want your dad to come home; the doctors keep calling that “back to baseline.” What was his baseline? Since your mom died he has lived alone. He cooked. He played cards. Now, his buddy Ira misses playing cards with him. He’ll never do these things again for sure. The doctors say a nursing home is the best we can hope for. The best? That’s the best? That’s terrible.

You learned a long time ago that he does not like to be told what to do. He does not want help. He’s made that clear. But this is your dad. What will you do without him? What are you doing now? Is he already gone? And why is he on so many drugs and machines? What do they even do? We’ve already established that he’s not returning to baseline.

You walk over to the pleather recliner chair that has doubled as your bed on weeknights. Your brother stops in long enough on the weekends for you to get new clothes and a shower in your home. God forbid he took time away from his career. That’s on you. You have vacation days, right?

Apparently this is how people die. It seems like an awfully miserable existence, but your dad is technically still alive. Is he? The doctors keep talking about what he would want. Well, he never said, “Hey, I would never want dialysis.” The doctors don’t push you for more information, so you assume your role now is to simply be there for your father until he is well enough to go to a nursing home. So you’re stuck here in this place, watching the man who raised you hover between life and death

This is overwhelming, and you don’t feel like you have any other options.

What the doctors didn’t tell you is that you do have another option. When they asked what your dad’s wishes were, they were attempting to elicit what type of quality-of-life he would find acceptable. But, they didn’t specifically ask if he would be okay with living an incoherent life. If he would be okay with a stranger bathing and changing him. Though you might not have chatted with your dad about these tough questions, you can infer from his lifestyle that he would not want to live that way. He would consider existence like that worse than death; that is, he would rather die.

Had the doctors tried harder to understand him, they might have provided you with information about sending him home to die more comfortably with hospice care. You would have asked, “What is hospice?”

But that is not what happened, and here you sit in your pleather chair.

Hospice is a type of care that recognizes that the end of life may be near. It draws the focus away from aggressive measures that aren’t likely to work, and moves towards making a patient comfortable in his own home surrounded by the people who love him. This may mean he dies more quickly, but he won’t be suffering like he is now.

Unfortunately, studies have suggested that hospice and related forms of comfort care are only discussed in 56 percent of physician conferences with family members when the patient approaches the end of life. If this is true, the above scenario might be common in U.S. intensive care units. Hospice care could be a relatively clear choice to make for many family members if only the option was presented to them.

Hospice care can occur in different settings for various illnesses. Since the focus of care shifts from life prolongation to comfort, patients might be transferred home, to a nursing care facility, or remain in the hospital but be withdrawn from all life-sustaining interventions.

Regardless of whether hospice care is provided in the home or hospital, the goal is to give patients the most dignified death possible. Though hospital sedation is one way to provide comfort, many patients would rather interact with their loved ones at the cost of this comfort. Hospice care providers help each individual strike their preferred balance of pain management and consciousness. They are trained to aid in emotional and spiritual transitions for both patients and their loved ones, giving families the opportunity to reminisce and gain closure.

While hospice is utilized more frequently today, the shift to comfort-focused care has been tentative at best. Perhaps this is because end-of-life discussions are emotional and some physicians do not want to tread into the land of vulnerable family members. These situations might make physicians feel uncomfortable because of insufficient training in speaking to patients and their families about end-of-life options. The stress of communicating bad news is compounded with a lack of practice. Physicians who believe strongly that care is provided to prolong life might even intentionally ignore the option of hospice care. This reality is tragic, and it places many patients in end-of-life situations they would choose against if they were just given the choice.

Hospice care is a valuable option to consider when patients are at the end of life. It may not be the best fit for all patients. But educating families about hospice gives them the chance to make the best decision for the patient.