Death is a natural part of life, yet it is also terrifying. Being young and dying is especially difficult to accept. 

Regina Tong, a hospice social worker, has to deal with difficult cases.

“The hardest parts for me are the young patients, like the moms with children, or younger people who are just not ready to die, but they get this terminal illness, and their parents are grieving. Those are really hard for me,” Tong said. “I still get emotional just thinking about a few of my cases where I have had to support them. Those are heartbreaking for me, but I feel honored to be able to be there to help them.”

She once worked with a family who had to come to terms with the death of a young mother in her 30s. During the time that the mother was going through hospice care, the father and daughter, who was 14, were living in an unstable situation emotionally and financially. The mother’s family members were also involved in the process and often clashed with the father.

“Much of my job is to help the families accept that it’s a very chaotic and painful situation, and we don’t have many solutions. So, it was really challenging for me to see the daughter feeling helpless. But ultimately, towards the end, after the mom passed away, the family got together. They ended up forgiving each other for what they were saying to each other because both parties were feeling out of control and reacted out of emotions,” Tong said.

The roles of a hospice worker

Hospice care is a program that focuses on providing physical, psychological, social, and spiritual care to dying patients and their loved ones, according to the Center for Disease Control (CDC).

A patient is often enrolled in hospice after a doctor determines them to have only six months or less to live. Hospice care involves nurses, social workers, and sometimes even religious figures.

“People have this understanding that hospice means giving up or signing on to your death wish,” said Chaplain Lavoni Moaia. “For most, it’s a blessing.”

Moaia has worked with countless patients in their 80s who have been in and out of hospitals for a long time.

“They get to a point where they’re just exhausted. They don’t want to be poked, they don’t want to have an IV in them, they don’t want to run tests and labs, and they don’t want to be woken up every two, three hours in a hospital setting,” Moaia said.

Moaia provides religious or spiritual support as a chaplain while working alongside the hospice care team.

“Sometimes we have patients who want last rights. I will give that, or sometimes I will reach out to either their local parish priest or rabbis, who can offer that,” Moaia said. “There’s a sense of, like, coming to terms, you know, and a sense of dignity and finding comfort in honoring a patient’s wishes.”

Tong’s role is similar to that of a chaplain or other religious figure in that she makes sure the patient is comfortable emotionally as opposed to the nurse’s role to make sure a patient is physically relaxed.

“A lot of times patients may not feel that they can talk to their families, because they’re either protecting them from burden and grief, or they may have a tension between family members and don’t really have anyone to talk to outside,” Tong said. “Not many people ever sit down and listen to another person’s thoughts and feelings. I do a lot of that listening and validating.”

Additionally, while the nurse’s focus is on the patient, Tong is there for the families because they are the ones who are often grieving and need someone to talk to.

“Sometimes it’s just providing compassionate support being a safe space for patients or their loved ones to process any feelings that come up with dealing with death or preparing for their loss of their loved one,” Moaia said.

Finding a purpose

Tong did not originally intend to become a hospice social worker. She started with a psychology major but needed to figure out what to do with it. Tong became a research assistant at UC Davis, where she studied Alzheimer’s disease. She would go to patients’ homes and administer tests to check and score their memories.

“I enjoyed going to their homes during the test because I got to know them, and it was very intimate,” Tong said.

As Tong continued to work with these patients, she started noticing things she hadn’t before.

“I also saw that some of our subjects had very difficult lives. I became more concerned about their living situation, but I couldn’t help because I was a research assistant,” Tong said.

Eventually, Tong decided to go to graduate school for social work so she could help the people she got to know so well as a research assistant.

Before starting in hospice, Tong worked in nursing homes and palliative care patients, who are people that aren’t quite hospice level but have chronic illnesses. However, when her mom died, she realized that she needed to stretch her boundaries and learn more about something she was uncomfortable with: death.

“That’s why I’m here. The more I work in hospice, the more I realize how important inner peace is. I see a lot of patients who are at the end of their lives, and they really struggle with the idea of death, even though it’s a natural process of everything that has a life. So people who resisted end up suffering so much towards the end,” Tong said. 

Tong’s work doesn’t just help her patients and their families; it helps her connect more with herself.

“I learned that I had to work on my own issues, attachments, and spirituality. I was not a spiritual person until I started working in hospice. I realized that we have so much more within us that we can develop as living things if they are connected with this world, and to accept suffering, accept pain, but no, not deny too much because it causes something. It’s really hard,” Tong said.

Navigating challenges

Tong takes on a challenging role in trying to help patients accept what they are going through.

“I try to remind our patients who are still cognisant that they’re still alive; they’re just in a different, abled body,” Tong said.

One of Tong’s current patients is still in the process of accepting her situation, and Tong is doing her best to guide and support the patient.

Everyone grieves and accepts things differently, and Tong realized she needed to take the process slow with her patient. 

Tong has to build a relationship with her patient during this slow process.

“She would always cry for months, but recently, she’s learned to accept her situation. And I visited last week, and she had all these tasks in her bed, like sorting mail, cleaning out her old Christmas cards, reading them, and having a good laugh,” Tong said. “There’s something constant and scheduled that she can expect that makes her feel less helpless.” 

However, not every case is successful.

“Not everybody accepts their death, but I still show up for them, whether they’re resisting or accepting. I am there for a supportive presence,” Tong said.

Hospice care is hard work, but with time, things get easier.

“Most of my hospice patients are old, and they have chronic illnesses, so they’re following a trajectory of their aging process. It’s easier for me, personally, to do something that I feel okay with subconsciously. They’ve lived a full life,” Tong said.