Talking Frankly at the End of Life

I have spent a lot of time in the last few years thinking, writing and speaking about end-of-life care. But it all became very personal recently. My mother-in-law died two weeks ago.

With a designer's flair and a dazzling memory, my mother-in-law looked like Donna Reed in her youth, with Rita Hayworth legs. She adored her family and friends and loved nothing more than to be where the "action" was, in the midst of conversation and laughter. Over the course of her 86 years, she counted hundreds among her friends. Hundreds. When one of her sons died some forty years ago, she and my father-in-law received over six hundred condolence letters.

In the last year, however, my mother-in-law saw her once vibrant social life whither away. Severely debilitated by a lifelong battle with rheumatoid arthritis, a 10-year struggle with a series of strokes, and, more recently, multiple non-healing leg ulcers that necessitated an above-the-knee amputation, my mother-in-law found herself wheelchair-bound and restricted by all the medical equipment she required.

But her last weeks and her death fourteen days ago ultimately reflected the life that she loved. She threw a party with my sister-in-law's help. She was surrounded during her waking hours by family and new friends. And she was, as I heard her whisper one day, "so very happy."

What made all of this possible were a series of conversations, conversations initiated by doctors and nurses about end-of-life care. There was the conversation a couple of months ago where we learned that my mother-in-law was dying and would benefit from hospice. And there were the many daily conversations about what my mother-in-law desired and what she did not.

Her experience reminded me of a study that came out last fall in The Journal of the American Medical Association. Dr. Alexi White and her co-investigators showed that end-of-life care discussions with the terminally ill not only improved the quality of life of the dying but also eased the grief of their survivors.

I interview Dr. White in this week's "Doctor and Patient" column, and I write about my mother-in-law's experience and the effect of these kinds of conversation on my family.

What are your experiences with end-of-life care discussions as a clinician, a patient, or a family member? Please leave your comments below or on Tara Parker-Pope's "Well" blog.

Comments

[Kirti]

I'm very sorry to hear about your loss. It is touching and wonderful that at the end of your mother in law's life she was able to express what she needed, get some closure, and leave with some comfort and peace. Bless you and your family.

[Pauline Chen]

Thank you so much, Kirti.

[Fran Robinson]

I'm sorry for your loss. She sounds like she was a wonderful woman.

Keep writing! Everything you say is so long overdue and so very necessary. The US, in particular, needs to be educated about dying and death, and a new paradigm is so hard to bring about when churches scare people to death with the threat of hell. I've worked in hospitals or volunteered in hospitals and Hospice, and it is so difficult for families/doctors to let loved ones/patients die, and it is so often the most humane thing to do. In fact, it has shaken me to the point where, if I get a terminal disease, I just want to be made comfortable and to be allowed to die. And if that's not possible, I have a relative in Oregon that I can stay with until I find an MD who will help me.

You go, Girl! Keep writing/speaking out!