"They just want someone to go to and go through all the stages of emotions with them."

 

It's the beginning of the day, and Kei enters the office of home healthcare. She gets her assignments and goes through patient charts. Having been a home care nurse for five years now, the process is pretty streamlined to her. As part of her job, she takes care of palliative patients too. Many of these patients either pass away at home or are at hospice. For palliative patients, she goes through their medical history and checks their current health condition. Then she gets in her car and travels to each home.

 

With each patient, there’s a head to toe checklist assessment that they do. It mostly involve asking them about their overall health such as questions about their pain, eating habits, or their output. They focus on symptoms they could possibly alleviate such as pain or nausea. The whole process takes about fifteen minutes to half an hour. For patients who express bigger issues with pain or wounding, it takes about an hour. If there is any need of assistance, physiologists, OT, PT, and social workers can also come to the house. Any major concerns or changes of medications are relayed to an ICU nurse or doctor. 

 

When I asked her about some of the things that she’s learned, she mentioned being able to talk about death. Normally, in healthcare, we are so focused on saving more lives. Kei believes that, because this aspect of healthcare is so prominent in society, it has become hard to talk about death. In palliative care, a life can’t be saved necessarily, but it can be made more comfortable and better. She has found that people are more open to talking to her about death, whether it is because they are currently taking care of a loved one or have recently had someone who passed. 

 

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Part of her job is helping start conversations about the end of life, which she heavily encourages families to have while the patient can still talk. When patients get referred to the palliative branch of her office she usually tries to gauge everyone’s understanding of the situation. It took her a little while before she realized how important this first step is. “When I first started, some of the nurses told me to go in a dictate, ‘You have been referred to home health. You have been referred to palliative program.’ And then the patient will be like ‘Why are you saying palliative?’” She learned that, in those situations, their doctor either didn't talk to them enough about their disease/condition or had thrown too much information at them. In other words, there were still details that needed to be sorted out.

 

Once the understanding is made clear, she can start talking about the different scenarios and options. “I say ‘Okay, after you have had that conversation with your doctor, did you talk about what you might want to do in terms of a situation if your heart were to stop like would you still want the paramedics to do everything? Do you want them to do CPR? Or do you want to just go peacefully?’ You don't want that anything to prolong that suffering.” In this case, there is a spectrum of the kind of care they could receive, from the most aggressive treatments possible to as little care as possible. The requests of families and patients can fall anywhere along this spectrum, and it’s not uncommon to see them be polarized. For example, families may still want to try treatments while the patient is ready to let go. When decisions are made, there is a form that they sign, and it is then given to the doctor. The form has specific questions. “Do you want comfort care only? Do you want medical treatment? Do you want blood transfusions?” et cetera. From that time onward, the nurses and the other medical professionals help the family navigate the health system and their options.

 

Having the conversation planning for the end can be difficult. For my grandmother, I know that she and my mom had clearly established that, if she were to ever be in a critical condition, she would only want treatment for pain. She would be ready to go when the time comes. For her case, that was easier to decide. She has lived a long life and knows that she does not want to be bedridden. For other families, this may be difficult to accept, especially if the loved one wants one thing and the family wants completely different treatment. To have these conversations, being able to listen to each other is important. More than anything, it’s important to acknowledge and respect the patient’s decisions. Kei and my dad, who used to be a hospice director, have found that accepting comfort treatment is one of the biggest struggles that families have.

 

In that same vein, the family may try to do things do other things with good intent but are no longer necessary, such as giving people food or fluids. “They are at a huge aspiration risk and it’s hard too—because in a lot of cultures food is love, and it’s hard to wrap their head around that there are other ways to show love.” It’s understandable. You want to express your love for someone, and one can only prepare themselves for the end so much. It can still be overwhelming. My dad, who used to be a hospice director, has seen this through his work. Even at the very last moments of life, he has seen people panic and call for an ambulance instead of the hospice.

 

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However, there are other ways you can express love. For example, research on animals shows that hearing is usually one of the last of the six senses to disappear. Because of this, Kei encourages the family to speak to their loved ones to speak to them, even if they are unresponsive.

 

Kei has seen how resilient people can be even right at the end of life. Without any output or responsiveness for days, people still manage to stay alive. She finds that people tend to hang onto life for a reason, even if they haven’t eaten or had any output for days or weeks. One of her patients was like this, and the family believed that she was staying alive because, for the first time in years, everyone from the immediate and extended family was all under one roof. She wanted to stay alive to enjoy it. There was another case in which a person was alive for weeks. The family eventually got her son to call and speak to her on the phone. He had asked to forgive him for any wrong he had done for her and told her that it was okay for her to let go. A few hours after that conversation, she passed away. For this reason, she believes that speaking to them can really help. “Yeah, so I think that it’s amazing that people will…they'll choose when to go and like they'll feel that love.”

 

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Out of all the things that someone can do for their loved one, listening and just being there is one of the greatest things that you can do. She has learned through her personal experience in work and that is learning to listen. At the end of life, people don’t usually look for advice on how to live the rest of their lives. More than anything, they just want someone to listen and at least be present in the moment with them. “They just want someone to go to and go through all the stages of emotions with them,” Kei concluded. Both patient and family go through these emotions together, and not quite in order. Sometimes you’ll jump back and forth between different emotions, and that is okay. What is important for the family to do is to be with them and support them as they are going through it. Listening is something that you can do even if you are not physically present with someone. My mother talks to my grandma on the phone as often as she can. Even though she already knows about her aches and pains, she is willing to listen to her speak, and this helps my grandma cope.

 

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During times like this it is important to take care of yourself too. Sometimes this means having a laugh. For example, Ms. Tricia and her sister would sometimes make jokes in order to lighten the mood and feel better. One particular piece of advice that Kei offered was to accept any help people offer you. “I would say it is a lot of them like if people offer to help you, take that help. Like if people [sigh] I know it’s hard for people.” Of course, this can also happen in a more professional capacity. For example, in my talk with Ms. Tricia, she had siblings to support here. In addition to that, she had support groups and medical services help her. Kei told me that it helps to especially reach out to any of the support systems around you, such as other family members, friends, and communities. People can offer to do small household things like cooking or running errands. Even though these tasks seem small, having help allows people to spend more quality with their loved ones during their last days. And even if time isn’t the issue, the family will have less to worry about.

 

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When I asked Kei what the best part of her job was, she said that it is when the symptoms are under control and she can help the patient live comfortably for the rest of their days. During this time, they can still enjoy being with their family, even if there is not much they can do anymore, like walking and talking. “You still get that privilege to help them and be with them through it,” she told me. As a family member, there are many ways in which you can show your loved one that you care. Above anything, listening to your loved one and being there to emotionally support them is one of the best things that you can do. At the same time, you don’t have to do it all alone. If there is anything that I have learned from my research, it is that there are so many resources for patients and caregivers in end-of-life care, such as people like Kei.