Giving permission to die

Bob knew that his mother, Eva, had lived a long and fulfilling life. She had raised three children, held several different jobs –- including nurse, waitress, and limousine driver –- and had a cluster of close friends and relatives. A caring, thoughtful woman, she was also resilient and cherished her independence.

By the time she reached her 80s, this longtime smoker was in declining health, with high blood pressure and kidney problems that required dialysis treatment.

Several times a week, Bob told me, Eva would board a public bus near her upper Manhattan apartment to travel to the hospital for dialysis, a procedure that can take several hours to help rid the blood of toxins. She continued those treatments after moving to a senior residence, which provided meals, housekeeping, and other amenities that enabled her to live on her own.

By the summer of 2007, though, Eva had become extremely weak and short of breath, and she was hospitalized for an infection that was hard to diagnose. During a conversation with her doctor about plans for medical care, Eva expressed that she'd had enough. However, to discontinue dialysis would require a meeting with a psychiatrist to make sure she was competent to make such a decision.

Bob could understand why his mom was ready to stop. Eva had shouldered many emotional and physical hardships over the decades, from escaping Nazi Germany as a teenager to losing a husband and two of her three grown children. Her spouse had passed away in the 1970s, her youngest son had Down syndrome and died in 1995, and her oldest son suffered a fatal massive stroke at age 48 in 2002. And now she was losing her strength and independence.

Bob also realized she probably wanted permission from her only remaining son. "I told her, 'Nobody wants to lose a parent, but I see what you're going through, and if this is what you want to do, I'll support you,'" Bob recalled one recent day, as we sat in his Newton, Mass., home. "She seemed relieved and said something like, 'You know what, that's what I'll do.' My mother was not one to deliberate at length about anything. She would make up her mind and stick to it."

Bob's wife, Tammy, remembers what happened after that conversation: "She called here and asked if it was OK with me. She definitely needed permission. And I told her right away, 'You have every right to do whatever you want with your life. We don't want to lose you, but we don't want you to suffer."

After a week or two in hospital, Eva had become bedridden and barely had strength to eat, Bob says. Eventually gaining consent from her medical team to stop dialysis, Eva decided to stay at Columbia Presbyterian Hospital instead of transferring to a hospice setting. Bob remained in New York and visited his mother during the day; at night, he would catch up on work (he is a controller for a clinical research organization) and answered calls from family and friends.

Mother and son talked about everything from the weather to her funeral arrangements, Bob recalls. She informed Bob that she wanted a short graveside service, and to not use a particular funeral home "because they charge too much." Tammy and the couple's daughter brought Eva bananas at her request, since they were supposed to accelerate the dying process. A rabbi who visited urged Bob's mother to tell her loved ones thank you, I love you, and I forgive you/forgive me –- the "four things" recommended by Ira Byock, M.D., a well-known leader in palliative care.

"She seemed very comfortable and at peace," Bob says. After about a week, Eva became sleepy and sedated and died in September 2007, just shy of her 88th birthday.

For Bob, spending that time together was reassuring and invaluable. "At least I knew she wasn't going to fall on the street and end up in some strange hospital, or waste away in a nursing home," he told me. "It was a relief for me, and I think it was a relief for her because she wasn't alone, and her life ended on her own terms. She was by herself at night, but she knew I would be back the next day and was not abandoned."

"The lesson for folks," he added, "is to try to be there as much as you can."
       

Consider this . . .

It's OK to give someone permission to let go.

Take time to be with someone who is dying.

Advocate for yourself and loved ones in the hospital.