Most of us would like to believe that medical people have our best interests at heart. We, or the people who have been appointed by us to represent us during a healthcare crisis, should be part of the decision as to how far to take treatment. Most of us trust that we’ll have options carefully explained to us so that we can make educated decisions.
Apparently, that isn’t always the case. Most disturbing of all to me is that where we live may be the indicator of how we are treated. In some parts of the country how we’re medically treated depends on how much money the medical system can make.
NPR recently ran a segment titled "Terminally Ill, But Constantly Hospitalized," about how many elderly people who have expressed wishes not to die in a hospital setting do so anyway. This varies greatly by state, with New York sitting on top when it comes to ignoring patient’s wishes.
Even though some people choose to fight a disease until the end, many do so because they don’t realize that they have a viable choice. Therefore, they treat it aggressively to extend life, but this treatment isn’t likely to cure the disease, manage the pain or focus on the quality of life.
The surviving husband of the featured couple in the NPR article talks about his regrets. Ron Faber says now, after his wife’s death, “I would have rather have had a really OK four-and-a half months than this endless set of treatments.”
Perhaps, with more knowledge at hand, the Fabers would have had more quality time if less physical time. Second-guessing decisions won’t help Ron Faber. However, taking a look at the culture that pulled the Fabers toward the choices that they made may help others.
“New York City continues to lag in serious ways with regard to providing patients with the environment that they want at the end of life,” says Dr. David Goodman, who studies end-of-life care at Dartmouth College’s Geisel School of Medicine.
"The reasons they do this are many, but most experts agree that it has less to do with the unique characteristics and desires of people in New York and New Jersey than the health care system and culture that has evolved here," Goodman says.
Sadly, our medical culture calls for filling hospital beds - a take on "if you build it they will come." Specialists at the Dartmouth Healthcare Atlas maintain that one of the main drivers of this phenomenon is quantity. They say that people end up in hospitals here so frequently because this region simply has a lot of hospital beds.
A second reason for so many tests and procedures which often result in repeated hospitalizations is what Dr. Diane Meier refers to as the need to cure. She says that," if there’s a cancer it needs chemotherapy, that if there’s heart failure, it needs a procedure." Meier is a geriatric specialist at Mount Sinai and the director of the Center to Advance Palliative Care.
According to NPR, Mt. Sinai is getting a handle on this aspect of caring for terminally ill people. The chair of surgery at Mr. Sinai now "demands his staff discuss hospice alternatives with terminally ill patients and make an electronic note of the conversation that can be tracked. If it does not happen, he demands to know why."
In the case of Ron Faber and his wife, Faber now believes that if the couple had understood the options available they would have known that people don’t have to simply go into hospice care and die. With proper care, they can live the life that they have left with some quality. They can be cared for at home with the help of hospice doctors, nurses, staff workers and volunteers. There is also guidance from a chaplain if spiritual care is desired. And they can die with dignity.
Faber and his wife didn’t completely understand how small Paula Farber’s chance was that she could survive the surgeries and chemotherapy. They didn’t understand that by going through all that misery she was at high risk of her dying in an ICU.
There will always be people who choose to undergo aggressive treatment no matter their age or the chance of a successful outcome. That should be their choice. However, everyone faced with such a dire diagnosis should be given all of the facts with business considerations taken out of the equation.
What we need to remember is that it’s up to us to become educated and to keep our loved ones in the loop as to our thoughts about life and death. This doesn’t mean that we must be harping on death during every family holiday, but our loved ones need to be informed.
It also means that finding out just how the hospitals in our own areas function when it comes to aggressive treatment may have a significant bearing on whether or not our final wishes are followed - or not.
Mogul, F. (2014, September 21) Terminally Ill, But Constantly Hospitalized. NPR. Retrieved from http://www.npr.org/blogs/health/2014/09/18/349585612/terminally-ill-but-constantly-hospitalized
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.