One family’s five-year battle for a terminally ill mother’s choice on how to die

Fay Hoh Yin thought long about how she would want to die after being diagnosed with incurable stage IV T-cell lymphoma in 2014.

She and her two children, Monona and Duncan, experienced a “dress rehearsal” of what her death might be like in late 2015 when her body started to fail her. At the time, doctors believed it was Fay’s cancer killing her, but her heart condition, called atrial fibrillation, was actually taking the largest toll on her body.

“I was ready to die,” Fay told The Independent. “I had all the horrible symptoms; I couldn’t breathe and I had no energy at all. It was very painful.”

That was when she first looked into Compassion & Choices, a nonprofit that advocates for end-of-life options, such as medical aid in dying, for terminally ill patients.

Fay lived in Delaware at the time, where medical aid in dying was not allowed. But the nearby state of Vermont offered the option for mentally capable people given a terminal prognosis of six months or less.

Vermont’s bill, similar to eight other states and District of Columbia that offer medical aid in dying in the US, requires someone to have two physicians sign off that they have a terminal prognosis and are mentally capable. The patient can then receive a prescription for a drug, which they most self-administer, that would allow them to end their life before their illness ultimately kills them.

Suffering was one of Fay’s greatest fears when it came to thinking about her death because she watched her own mother experience a painful death in the years prior.

“I had seen my own mother suffer terribly for two years, and so that made a strong impression on me,” she said. “To this day, I cannot think of the happy times easily.”

Then Fay found herself in a similar position, with her own two children watching on as she struggled with her health and mortality. All she knew was that she didn’t want to experience similar suffering as her mother or have her children witness her in severe pain.

“I was very terrified of that,” she said about the suffering. “Not so much of a death, but just the last almost non-human living of just dragging from day to day.”

She started researching medical aid in dying and even considered establishing residency in Vermont to utilise the state’s law in the fall of 2015 with the help of her daughter, Monona.

But Fay’s health went on the decline and she ended up in the hospital struggling to breathe. That was when she asked her daughter to “stop everything” in terms of saving her life.

“We activated her Do Not Resuscitate D.N.R order,” Monona told The Independent.

Then a hospice nurse discovered it was actually Fay’s heart condition, not her cancer, that was killing her at that moment, and doctors were able to provide adequate treatment so she could recover. But that period of time stuck with her, and she used the years following to research medical aid in dying and advocate for the option in other states.

“I don’t see any honour in me suffering”

Fay moved into Monona’s Brooklyn, New York, apartment following the “dress rehearsal” of her death while she still battled her cancer diagnosis and heart condition.

In New York, the legislature has introduced its Medical Aid in Dying Act for multiple years. In 2020, the act had its highest chance of passing through the legislature, but the coronavirus pandemic influenced lawmakers to pause all legislative practices unrelated to Covid-19. Fay and Monona were scheduled to meet with New York lawmakers in April 2020 about why they advocated for medical aid in dying, but that was all cancelled due to the pandemic.

When Fay spoke to The Independent in February 2020, she had been to the ER 15 times in the last two months, with other times at hospital spent undergoing chemotherapy for her stage IV T-cell lymphoma. Symptoms she experienced included extreme tiredness, neuropathy, and shortness of breath.

“I’m constantly adjusting to the fact that I’m losing a little bit of myself,” she said, “and so I don’t think I can live independently anymore.”

While she enjoyed her life to a degree, Fay still wanted medical aid in dying as an option for herself for the moment when her suffering grew to be too great.

“If you have children that really care for you and love you for you, it is a terrible, terrible punishment for them to watch you die,” she said. “I’m losing a little bit of everything every day. I can accept that. I can still enjoy life towards a degree. And I really enjoy being with my family … but when the pain gets too much and there’s no hope, I really don’t see anything honourable in fighting.”

Fay remained adamant that she wanted to live her life with her family by her side, but she wanted to do it on her terms with the option to choose medical aid in dying at the end.

“I want to live; I do want to live,” she said. “But I just don’t see any honour in me suffering with my family watching totally helpless. I should have the freedom to decide how I want to go.”

Monona added: “If you saw how hard we are trying to keep mom here and with us … not surviving but really living … This is an extension of the love we’re showing to preserve her life. It’s not at odds. I just think people don’t get it because they haven’t had to make these really hard choices.”

At best, Fay, who described herself as a realist, believed she would live another two years with her terminal illnesses.

“There is a definite lifespan,” she said, “and I think I’ve fought enough because sometimes I’m so tired, just, you know, managing my body.”

Fay died on 20 July at the age of 88 with her family by her bedside in Brooklyn.

Her death came just over two months before this article would be published, and at a time when both Delaware and New York had medical aid in dying bills moving through each state legislature.

“I’m carrying on her message”

When speaking to Monona following her mother’s death, she said Fay advocated for medical aid in dying into her final hours.

“Mom really never lost her frustration at being thwarted,” Monona said. “Like she always, always said, ‘It’s not fair that I can’t end my suffering.’ And she was very frustrated she couldn’t tell lawmakers directly.”

“She said the words ‘Compassion & Choices’ in the last few hours of her life,” she added, referencing the nonprofit Fay shared her story with when advocating for medical aid in dying. “She was mad that she had been denied this option  … So I’m carrying on her message.

“This is not my message. She talked about it two hours before she died, and she felt angry that lawmakers were not letting her and her end suffering.”

Fay stopped chemotherapy treatment for her cancer at the end of February. Then the pandemic hit and her family worried about three things that could kill Fay: terminal cancer, heart failure, and Covid-19.

So, in an effort to figure out her next steps, Fay looked into other options that would be available to her at the end of her life.

Sandwiched in between Delaware, where Fay owned a home, and New York, where she lived with Monona’s family, was New Jersey, which had passed its New Jersey Aid in Dying Act in August 2019. The accessibility of the state influenced Fay to ask Monana to research establishing residency in New Jersey.

“She did not want to leave things to chance,” Monona said. “She didn’t want to arrive at a crisis without some kind of safety net in place. And so that’s how we approached this whole period.”

Monona went as far as speaking to funeral homes and New Jersey physicians who might take Fay on as a patient. But Fay ultimately decided she did not want to die away from their family in Brooklyn.

“She said it would just be too sad for the two of us to leave the rest of the family, move to New Jersey, and wait for her to die,” Monona added.

Other end-of-life options were considered, but those too fell through.

“We were left with no means of legally ending her life,” she said, and so the pair instead sought advice from palliative care doctors about the final steps of Fay’s life.

Fay, who underwent multiple palliative blood transfusions during this time period, stopped them on 8 July. Hospice care was then brought into their home on 12 July.

Suffering was still a concern for Fay, but the only extreme suffering she experienced was during the final hours of her life.

“What I learned from not having medical aid in dying is that you need wonderful hospice care,” Monona said. “Like, yes, my mom, to her dying day, she wanted a prescription to end her own life. She wanted that and she was angry that she couldn’t have that. But, at the same time, I would say she died peacefully.”

Excellent hospice support, palliative care doctors, and palliative medicine were, to Monona, what people needed to have what might be considered a “good death”, something not everyone can access.

“You kind of need everything to have the kind of death my mom had, and that was extremely important to us as survivors because I’m a lot less destroyed than I was the first time she almost died,” she said. “We just surrounded her with care, and she had that proverbial dying at home peacefully, surrounded by your loved ones.”

Opponents of medical aid in dying have cited religious reasons for being against the act. Other concerns include a terminal patient taking the prescription to end their life before all treatments are exhausted, or the chance a patients is coerced by doctors or family members to take the prescription.

Nine states and the District of Columbia legally allow medical aid in dying, and the laws incorporate safeguards to protect a terminal patient and their rights. These laws require a patient to have a six-month terminal prognosis, be mentally and physically capable to self-administer the medication, and approval from two state physicians.

“She was the most alive person”

Monona described the four-and-a-half years with her mother as a “beautiful time” after she almost died in 2015. In her final months, Fay still found a way to use humour when interacting with her children, son-in-law, and granddaughter.

“She had this glow of a person who is leaving this world fulfilled,” Monona said.

But fighting for end-of-life options for Fay, especially in her last couple months of life, cut into the time they could’ve spent doing other activities together.

“It’s a sacred thing when people die,” she said. “Fay got there on her own steam, but we spent umteen hours wrestling with her fear. It just wouldn’t have been the case if she knew, ‘I have an insurance policy. If I am in tremendous pain, I will have the insurance policy’ … that would have transformed the last four or five months of her life.”

“it’s not like she was looking for an easy way out,” Monona added. “She was looking for full agency. She wanted to be the captain of her own ship and she wanted palliative care.”

Although Fay actively advocated for medical aid in dying as an end-of-life option, both she and her daughter emphasised how she wanted to live for as long as she could.

“The person in my life who wanted medical aid in dying the most was the most alive person,” Monona said.

“Opponents like to treat this as some casual decision,” she added. “No, it’s really the opposite of causal. It’s a very considered decision by people who have fought valiantly and they deserve to have peace at the end.”

Leave a Reply

Your email address will not be published. Required fields are marked *