One of the hardest decisions of my life was telling the oncology nurse at the Brattleboro Memorial Hospital that I was not submitting my 87 year old mother to the painful daily treatment the blood specialist was recommending. It was clear the treatment was not going to cure her or make her life more comfortable and she had trusted me with her end of life care when she could not decide for herself. Though I knew she did not want extraordinary measures or aggressive treatments to prolong of her life, it was still a gut wrenching decision.
I am not alone, confirms the recent report, “Dying in America,” by the Institute of Medicine of the National Academies, which begins: “For patients and their loved ones, no care decisions are more profound than those made near the end of life.” For the many of us who have been and will be directly impacted by the terminal illness of a loved one, the recommendations in this report are welcomed and far reaching.
For example, the report urges doctors to tell their patients the truth about their terminal illness. Today, as little as ten percent of doctors say they would do so. But without such knowledge it is impossible for patients and their families to make the best possible decisions about care, including opting for receiving comfort care in their homes or accessing the services of hospice.
The report recommends that families be courageous about having those difficult conversations about death and dying. This will help them prevent disagreements when weighing options between aggressive medical care and comfort care in cases of a relative’s terminal illness or a fatal accident. The report reminded me of a friend, who wished her family had opted for comfort care for her dear aunt, instead of the aggressive cancer treatment that made the end of her life “miserable.”
The report also suggests that medical schools include the latest developments in pain management in their curricula, because many doctors know little about how to control pain at the end of life. And for more insurance companies, including Medicare, to pay doctors for the time spent discussing advance directives with their patients, that is, talking about their specific wishes for end of life care. All these changes could help reverse the sad fact that while nearly all Americans say they want to die at home, only about 25 percent actually do. Most die in hospitals and health care facilities. Improving end of life care concerns all of us – and this report makes it clear that there are many ways we can “improve quality and honor individual preferences near the end of life,” if we all do our part.