“You know I always explain to them that, you know, 'You and I are not the ones laying on that bed.'"
It’s morning, and my dad walks into for weekly rounds. In the room are other doctors, physical therapists, aides, and certified nursing assistants. For one to two hours, the team talks about all the patients the hospice serves. The numbers are as high as sixty, so the meetings are fast-paced. During that time, they talk about everything from diagnoses, treatments, medications, and other parts of care. Overall, the goal is clear: to alleviate any suffering and improve quality of life.
My dad is a doctor who has been involved in end-of-life care for twenty-five years. For more than four years, he served as the director of one of the hospices in my hometown. Before this, he had been involved in end-of-life care through work in the intensive care unit and regular hospital rooms. He explained to me what it is like to handle critical situations outside of hospice: “When they come into the hospital, the first thing that we ask is their living status or will, that in the event they get worse or if they stop breathing or if their heart stops whether they would like to be placed on life support, have a resuscitation, or just make them comfortable.” At the point, when the patient’s condition worsens, people have the option of hospice care at his hospital. Like with regular hospice, there is a time discussing with the patient and family, finding ways to help them.
He has had the opportunity to follow people from the hospital into hospice, some of the people being his patients and other times not. “Most of those people, they just want to stay home they don't want to leave the place or they cant get out of the house.” For these people, hospice can see them at home. He sometimes still sees these in the hospital or office visits.
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Over those years as a hospice director, my dad learned the basics of taking care of hospice patients, such and giving people medications and communicating with referring physicians. However, one of the most important skills that he learned was how to talk to the patients and their families. “You learn what to tell them, the patients as well as the family, so that they don't get offended because you mean good and to help them. But sometimes, some of the physicians, the way they tell them something, the patient will most of the time misinterpret.” Learning how to speak with patients and their families about a very critical situation helped him learn not only how to provide end-of-life care, but also the other kinds of care that he gives in the hospital and clinic.
Sometimes, people end up living longer than expected in hospice. My dad talked about how some people seemed to be better than they were before coming to hospice, despite their terminal conditions. “And in fact, we have people that we put them on hospice that got better…We had to discharge them from hospice because they don't qualify for hospice care anymore.” Regardless of whether they live longer or not, people tend to be happier.
Situations in which patients have no family are difficult. In these cases, they either don't have children or have family that lives too far away or work all the time. There is only so much that hospice can do. Staff can visit people at home, but sometimes these individuals need full-time care. Most people in this situation end up in the nursing homes. For some, this may involve selling their house. Usually, if people can, they try to stay in their own homes. Typically, people move to nursing homes because they do not have the support to stay at home or need extra care and surveillance, as was the case for Ms. Tricia’s father.
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In terms of what a hospice can provide, there is psychological care. Psychologists are available to give patients and family psychotherapy or advice counseling. Through my dad’s experience, he sees that it can make a world of difference. In addition, people can get spiritual support from a priest or chaplain. Social workers can also coordinate with family and help them make decisions. Lastly, there are medications. The medication is typically expensive outside of hospice. However, because these patients qualify for hospice, a lot of these medications are covered by insurance or Medicare.
My dad also emphasized how important nurses are. Nurses can routinely assess the patient and catch any complications the patient may have, such as a bladder infection or pneumonia. By relaying the information to the hospice doctor, the team can give the patient proper treatment and save a trip to the hospital. “By adjusting those medications, with the help of the nurse assessing them, we can help them feel better so they don't have to struggle they can’t breathe and when the time comes that they [are] getting close to their end of life that they’re having a hard time breathing or having a lot of pain.” The medication is adjusting enough so that the family can see that the patient is cared for and the patient themselves can feel comfortable. Overall, this increases the quality of life for patients as they reach the end.
Overall, what struck me most about this part of our conversation was just how big of a team there is when it comes to hospice care. Beforehand, I had a vague idea of what hospice care was because of my volunteering at the care and rehabilitation center. But I had overlooked how interdisciplinary the care is and the extent of coordination it requires. Hospice helps take care of different kinds of pain and struggles, from medical, psychological, and spiritual perspectives. I think that this goes to show how helpful of a resource hospice. When I think of hospice, I mostly think that they help with the last few hours of life. But it really is much more than that, as my dad has shown. The goal of hospice care is to ensure that patients and family don't have to deal with end-of-life care alone. The team makes sure that they are informed and comforted every step of the way.
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While hospice does supply treatment, care, and medications, it isn’t able to provide other necessities like household services or electricity. This applies to the nursing home as well. In the nursing home, people are responsible for the payment of room and board. Everything else simply follows. People are able to handle this if they have enough money or insurance that covers the expenses. People moving into nursing homes can also use the money from selling their houses. People who cannot afford a nursing home usually go to hospice as the next option.
Usually people in hospital live for less than six months. During this time, the patient and family need to make decisions about whether they want to keep fighting or settle into hospice care. During this time, my dad said, the biggest favor you can do for a loved one is to respect their decisions. As a hospice director, my dad says it is very common to see families who are not ready to let go of their loved one yet. “You know I always explain to them that, you know, you and I are not the ones laying on that bed. You and I are not the ones getting poked, giving blood, having procedures done or being on a respirator. They cannot talk. They cannot eat. And they’re always in pain, lying in bed.” In other words, quality of life is low. As people who can still walk and talk, we have the freedom to leave the situation. The loved ones on the bed are not. For this reason, when the loved makes the decision to either keep fighting or to not have resuscitation once in a critical state, the family should respect their wishes.
My dad doesn't blame them though. The end can come unexpectedly, and, sometimes, people find that they are not able to cope. As a result, they might call an ambulance, even if it means having the patient go through a series of medical tests. “And a lot of those people have not seen these kinds of situation, so it is the first time for them to encounter it. It is hard for them to accept.” My dad described families as typically going through three different stages when caring for a loved one. At first, there is the denial stage, where the family can see what is happening and still can’t believe it. Second, there is an anger stage, where the person wonders why their loved one is the person going through the suffering. Later on, they can get depressed. For some, eventually, there is an acceptance stage. Not everyone goes through all the stages and not necessarily in this order, but it is helpful to be aware of one's own feelings.
There many things that family can do to improve the patient’s quality of life. They can make sure that they take their medication, help them open pill bottles, cook, or even go to the bathroom. At first glance, a lot of these things seem pretty same, but they make a big difference for the patient. “I think those are the things that a lot of people remember. Simple things.” Sometimes it means letting the patient do something that the family, or even the doctor, doesn't want them to do. As a pulmonologist, my dad pushes for is for his patients to quit smoking. However, for people with terminal illnesses in hospice, he allows the exception of smoking, even if smoking is what caused the health problems in the first place. He realizes that, for some, it “is the only happiness you know or satisfaction that they patient gets so we let them smoke.” When he comes across people in these situations, he tries his best to explain the allowance to the family.
Back home, people used to approach me, expressing how grateful they were for my dad when their loved one was dying. Often, they talked about how comfortable their loved one was when they passed. Looking back on these encounters now, I see another side in their stories. Perhaps they were also comforted to have someone go through the journey with them.