Doctors are just like the rest of us; it's not easy for them to talk about death
A recent series of studies appearing in JAMA Internal Medicine examined patients' roles in medical decision-making (summary here). Perhaps unsurprisingly, some patients want more or less of a role, but an important finding relevant to end-of-life issues was this:
In their study, Wachterman's team interviewed 60 of the sickest dialysis patients and their doctors about expectations for the patients' survival and to what degree they had been discussed.
The researchers found only two patients whose doctors may have discussed their prognosis with them, and that more than half of the doctors said they would refuse to discuss prognoses - even if patients asked.
On the one hand, the results of this study show that doctors are just like the rest of us. It's not easy for them to talk about death.
On the other, it shows that we cannot be content to think, "my doctor would have told me if…" Such as, "if I only had a year to live." It shows that we may need to be persistent in communicating with our doctors, or may even need to seek out a different doctor that will communicate more readily.
Reluctance to communicate honestly about death is troubling because we know that advance directives and POLST can help patients be in control of their own lives and decisions at the end of life. The Leaving Well Coalition promotes the idea that everyone should communicate their wishes regardless of age or health status, but those with a terminal condition particularly need the opportunity to complete an advance directive or POLST.
Even more importantly, as study author Wachterman described, "I think we do a disservice to patients if we don't give them a sense that time could be short, because they have a lot that they want to do with the time they have left."
Doctors Do Not Want To Be Resuscitated
There seems to be a disconnect between doctors and dying patients. Doctors overwhelming report that if they were faced with a terminal diagnosis, with little to no chance of recovery, most doctors would not want heroic measures to prolong their lives. In other words: Most doctors would not want the health care interventions for themselves that they so often give their patients. The vast majority of doctors surveyed would not choose to be on a ventilator, a feeding tube, have ineffective chemo therapy treatments or wish to have CPR. And the last thing they want is to die in an intensive care unit.
Listen to a story from NPR radio lab about the Johns Hopkins study that asked aging doctors about their views on end-of-life treatments.
Intensive care and short hospice stays are not what patients want.
A Brown University study finds that while hospice use is increasing, patients are still not getting the care they want or the benefits that palliative care can provide. A study published February 6, 2013, in the Journal of the American Medical Association reviewed Medicare fee-for-service records of more than 840,000 people aged 66 or older who died in 2000, 2005, or 2009. Researchers saw a positive trend in the proportion of dying seniors using hospice care, which increased to 42.2 percent in 2009 from 21.6 percent in 2000. However, the proportion who were in intensive care in the last month of life also increased to 24.3 to 29.4 percent. More than a quarter of hospice use was for three days or less, and 40 percent of those late referrals came after a hospitalization with an intensive care stay.
Widow Petitions Hallmark for Hospice Cards
“Every day across this nation there are patients receiving care in hospitals and other care centers. In most of these rooms, the side table or often a wall is bedecked with cards saying “Get Well Soon.” But sometimes recovery is not possible and a terminal patient will no longer seek curative treatment. Often these patients will be cared for at home or in a hospice center. And then the cards stop.”
This is the beginning of Regina Holliday's petition to the Hallmark company imploring them to create greeting cards for hospice patients. The petition was posted on Change.org, a website where people can post petitions for causes they believe in.
While her husband was dying from cancer, Holliday found that friends and family had a difficult time expressing their feelings and showing their support. There seemed to be a communications gap between “get well” and “condolence”. She hopes that Hallmark, with its huge influence and skills in communicating heartfelt sentiments, will address this gap with new greeting cards that will support those who choose to suspend treatment and seek comfort at the end of life.