Heather MacNeil and Shaun Craig

Heather MacNeil and Shaun Craig shared their story in September of 2020.

Our mother was dying from metastatic breast cancer, which had spread to her brain. She was so fortunate that she was able to take advantage of California’s End of Life Option Act. If it had not been available, she would have found another means to end her suffering. Thankfully, it didn’t come to that and we were able to be with her, as she desired, in her last moments.

Lois Lynne Sherman was one of a kind. She had a gregarious personality, easily striking up conversations and establishing new friendships at the dog park, which she frequented. She was a mother of four whose family was absolutely everything to her. She was a caretaker throughout her personal life and as her profession in her sunset years. Our mother was the salt of the earth.

In November of 2017, mom noticed a lump in her breast. We soon realized the lump was massive – it was really scary. Her doctor diagnosed her with stage 3 breast cancer and advised her to move forward with surgery, chemo and radiation. Mom opted for a mastectomy, but declined chemo and radiation, stating that the treatment is often worse than the cancer. At 81, the side effects just weren’t worth it to her.

Mom did well for a couple of months, but in the summer of 2018 she started experiencing some cognitive impairment. A fall at home led her to seek medical attention. Her doctor directed her to the ER after realizing she was suffering cognitively. She wasn’t processing information well and couldn’t even understand and share what hospital she was at. They did an MRI and found her cancer was back and had spread. She had lesions in her belly and eight metastases in her brain.

Mom was convinced she was done with cancer after her mastectomy and struggled to accept she was now facing stage 4 cancer. Although mom was the sweetest woman you could ever meet, she was really mad that her cancer was back and threatened, “I’m going to go get a gun and kill myself.”

We understood what mom meant by her threat and Shaun immediately told her, “You’re not going to kill yourself.” Mom had taken care of family and many patients at the end of life. She had a clear picture of the suffering that lied ahead as her cancer progressed and she didn’t intend on enduring it. She had always expressed her desire for control at the end of life. It was dinner table conversation for us when we were growing up.

Shaun, who is on Kaiser Permanente’s San Diego Bioethics Committee, was knowledgeable on the End of Life Option Act and reminded mom that this option existed in California. Before she was ever diagnosed with cancer, mom had celebrated the day California’s law had gone into effect years prior. Now, the option calmed her anxiety about her situation and allowed her to focus on treatment options.

Mom tried radiation on her brain once or twice, but her tumors just kept multiplying. Within less than a week, the eight metastases had increased to 14, and then soon to 25. There was no point. No treatment was going to slow down this cancer. Yet, no doctor volunteered a prognosis.

We had to pressure mom’s medical providers into telling us the reality. Mom was dying. We felt like no one wanted to say, “You’re going to die within six months.” We had to advocate to get that important information so that mom could proceed with her wishes to access California’s law.

Once mom knew she wasn’t going to get better and her cancer had spread to her brain, she was very clear on what she wanted.

Mom’s hospital providers were dragging their feet so we decided to move quickly to enroll mom in hospice so that she could make the request via that route. We had to put the pedal to the metal to get all her ducks in a row. Mom was losing her physical and cognitive abilities quickly. We knew if we had even waited another month, she likely would have lost the mental capacity to make her decision.

Shaun’s daughter is a hospice nurse and helped facilitate enrolling her grandmother. Within days, the hospice medical director came to visit mom at home and she put in her first official request. We assured mom that once she had the medication, she could always choose not to take it, but that the process takes time so it was important to move quickly if she wanted her wishes honored.

Hospice was of wonderful support and made the entire process easy. For mom’s convenience, her appointment with the consulting doctor was via telehealth.

Friends and family came to visit to say their goodbyes during mom’s last two weeks. People brought flowers and gifts for mom, and communicated their love for her. It meant a lot and she was so grateful. She loved being the center of attention. Her dying wish was that she could die at home surrounded by her four children. It was fabulous that we could all plan to be present at her death, it was the thing she really wanted, insisted on.

Mom knew her medication was scheduled to arrive on October 5, 2018. Mom never wavered in her decision and was ready to move forward with her plan. She called Heather that morning and asked when her aid-in-dying medication would arrive. Mom was anxious for the arrival. As soon as her medication appeared in the afternoon, she immediately took the anti-nausea medication that one must take an hour before consuming the aid-in-dying medication. Mom was inpatient and asked, “What am I going to do for an hour?”

We managed to spend the time beautifully as a family. We all sat around mom and shared fond memories of her. It was cathartic for us to celebrate our memories together and not focus on the medication.

An hour later, mom drank the solution of medication and laid down. She was asleep within five minutes. A social worker from hospice was there to monitor mom and lend support. Mom’s partner put on the Rolling Stones, which mom loved. Mom died an hour later to the Rolling Stones’ You Can’t Always Get What You Want.

“You can’t always get what you want

But if you try sometimes, well, you just might find

You get what you need.”

Mom got exactly what she needed: peace and an end to her suffering.

This felt like the most wonderful gift we could give our dying mother. It was a very positive experience for mom and she was incredibly grateful to have it as an option. We cannot express how much it meant to allow her to die the way she wanted. Having the option of medical aid in dying also allowed mom to spend her last days the way she wanted, around the people who meant the most to her. We are thankful that this law exists.

From ask to end was 16 days. We recognize, however, that we had some privilege in our experience. It is not normal for this process to move so quickly. We know that it usually takes at least about two months. For a dying person, that is a very long time. Not everyone is so fortunate to have family who work in hospice or family who not only know that this law exists, but the how-to of the process.

If the family didn’t know and the doctor doesn’t inform, what option does the patient have? No provider ever volunteered the information to mom.

We believe that changes need to be made so that patients have the opportunity for fully informed consent. Doctors should be required to inform their dying patients of all their options and to be clear about prognosis.