At the end people can lose everything
November 4, 2013 Updated January 18, 2014
Medical expenses in the last week to month of life can cause people to lose everything they have worked hard for all of their lives. You have heard a hundred times about the outrageous expenses that may make sadder a person’s final illness.
A positive response to my article on Approaching the end of one’s life included a request from Dr. Bill Sharpton to write another article “addressing your medical peers and hospitals who without doubt seem to do too much unnecessary diagnostic testing on those nearing the end of life, especially in those cases who all (including closest kin) agree are “terminal”. Keeping a dying person comfortable (Hospice) is one thing, but the ordering of unnecessary testing is another. I think that this subject also needs to be addressed. Those less fortunate who have no major medical coverage can easily lose everything that they have worked so hard for all of their lives and lose it all in a relatively short period of time…..and many have. And unnecessary testing on those of us with excellent major medical coverage will negatively affect the bottom line of the insurer and consequently raise premiums of all remaining down the line”.
Here is an attempt to address the issue raised by Bill Sharpton. To gain control over doctors is no small challenge. If the contest is being waged in a hospital it gives the doctor the home field advantage. In the hospital it may be almost impossible for the patient’s wishes to be followed. If you are a doctor caring for a person whom you have cared for for years, l would hope that you and he or she have discussed carefully end of life questions. PHYSICIANS, I consider that to be your responsibility. It is so much easier in advance. But if that communication has not happened in the weeks, months and years before then you, the very, very ill person, must express your wishes FAST. No assumptions. Your clear preferences must be expressed if there are things you want to have happen or want to avoid.
If you have strong feelings about what you want to have happen, go ahead and write it down now.
If you enter a hospital and your care is turned over to a hospitalist (as is becoming more and more common), do not assume that your long term physician and the hospitalist who is now your physician have or will communicate effectively. If it has not happened you and your family must demand that this happen.
If the contest between you and your physician is happening at your home, then you and your family have the home field advantage. At home once referred to Hospice by your physician, you and your family may work with Hospice to stop heroic interventions that you may want to avoid. Hospice, on the other hand, is usually excellent at providing adequate medications to avoid pain and is extraordinarily good at interventions and suggestions as to how a dying person and the family of a dying person can be as comfortable as possible.
Fortunately, it goes without saying that there is no way to approach the extraordinary interventions that accompany care in an intensive care unit (ICU) at home. Four days to a week in an ICU may cost more than some people have saved in an entire lifetime.
At home Do Not Resuscitate (DNR) orders may be more under the control of the person who is dying and his or her family than when a person is dying in a hospital. DNR orders are more likely to be completely overridden when a person’s final days to weeks are in a hospital.
Each person is the captain of his or her own health team. It is amazing to realize that this is even true for many of the decisions that will be made right before our own death.
One final thought. People can win at the end of life too. This too is an inside job.
I recommend to you the Laura Linney, Philip Seymour Hoffman movie, THE SAVAGES.
Tip: Watch it some evening, when you are strong, and when you are NOT overly anxious or feeling low. The Savages is a movie that “explores the depth of one family’s emotional and disconnect.” It is really quite beautiful.
Robert A. Hatcher MD, MPH
Professor of Gynecology and Obstetrics
Emory University School of Medicine