End-of-Life Choice, Palliative Care and Counseling

Posts TaggedDNR

‘Allowing’ vs.’Do Not’: Language Makes A Huge Difference in End-of-Life Decisions

By Rev. Dr. Martha R. Jacobs
Huffington Post
July 6, 2012

This past week I had to do something that I hoped I would never have to do. I had to sign a do not resuscitate order (DNR) for my mother. When the doctor told me on the phone that we had reached a point where it would not be helpful for my mother to be resuscitated, I agreed with him. When the DNR form came through the fax machine however, I found myself resisting signing it. Why? I know it is what my mother would want — not to be resuscitated when her body was naturally shutting down. And yet, signing something that is titled “Do Not” flies in the face of that. My mother’s body is naturally aging and her organs are “getting tired.” Her kidneys are beginning to shut down. Her body is beginning its “natural” process of shutting down. So, why am I signing something that says not to do something?

I am a professional chaplain and for the past 20 or so years I have been helping families make this very same decision. I have stood with them when the doctor has told them that their loved one’s body is shutting down and resuscitating them would cause more harm than good. I have held them when they have cried and prayed with them as they made their decision. At those times, I wondered if I would have the strength they had if I ever had to face this decision. Would I be able to sign something that says “Do Not” do something for or to my loved one? Well, as I read through the DNR form for about the 10th time, I found myself changing the language in my own mind to “Allowing Natural Death,” a term I learned several years ago. It was only after changing it in my mind that I was able to sign and fax it back to the doctor’s office and feel at peace with that decision.

Language is very important to us. We define who we are by the language we use. In Texas, they use “Allow Natural Death” (AND). From what I understand from my chaplain colleagues, other hospitals and long-term care facilities around the country are having conversations about changing the way that they approach families concerning how their loved ones are to be treated as they near the end of their life. Lee Memorial’s HealthPark Medical Center, in Fort Myers, Fla., is one of the hospitals that is using an AND approach. And there are others outside of Texas that are moving in the same direction. Since I signed that form, I am all the more convinced of the need to change the form to “Allow Natural Death.”

I have been fantasizing about a way to approach the N.Y. State Legislature about this. It feels like too large a project to undertake, especially since it took more than 18 years for the N.Y. State Legislature to pass a law that most other states already have — a surrogate decision-maker law. So, for now, I will have to help families figure out how, for themselves, they can sign a “do not” form while “allowing” the body’s natural process to move forward.

I want my mother to die with dignity — dignity as she would define it. And I know that she would define it as dying “naturally” — not with people pounding on her chest and trying to re-start her heart, or intubating her so that a respirator might force air into her lungs and re-start her organs that had already begun to naturally shut down. This doesn’t mean that I am not already beginning to grieve her death; I am deeply sad that she is dying. But I am also prepared to give her the greatest gift I can give her by abiding by her wishes: that she die with the same dignity with which she lived for her 85 years here on earth.

Once Again, Race Matters-But How?

The key to the peaceful death most of us want, surrounded at home by loved ones and free from tubes and machines, is a frank talk with one’s doctor. Sadly, an alarming new study shows the impact of such a talk depends on a patient’s race. Investigators from Dana-Farber Cancer Institute found end-of-life discussions helped white patients, but not black patients, avoid aggressive, futile treatment in their last days and die peacefully.

Why would white patients who tell their doctors to forego painful and futile end-of-life technology get their wish granted, while African Americans who tell their doctors the same thing get ignored? I won’t speculate on a dominant cause because surely, myriad factors may come into play.

I will say this: The specter of the Tuskegee Syphilis Study hovers over this study, as it does over all evidence of racial discrimination in health care. From 1928, until exposed in 1972, the US Public Health Service disregarded basic principles of ethical research to study the course of untreated syphilis. Without informing thousands of black men of their diagnosis or obtaining informed consent, it assigned them to a non-treatment group. As we all know, the study demonstrated treating syphilis is better than not treating it.

Understandably, the ghost of Tuskegee haunts our nation’s black population and many harbor suspicions that the medical establishment withholds desirable treatments from black people. Shamefully, investigation into cardiac interventions and outcomes has substantiated those suspicions. Institutional bias and economic factors probably still contribute to many black Americans getting substandard medical care.

How does this realization play out in end-of-life care? In the new study, black and white patients in roughly equal numbers broached the topic of end-of-life treatment preferences with their doctors. But what followed those discussions was far from equal. Black patients were less likely to learn their illness was terminal. Many of both races who did understand their prognosis established an understanding with their doctors that a “do-not-resuscitate” order (DNR) would be placed on their chart.

Oddly, the DNR order had little impact on the care of black patients. Physicians were as likely to deliver aggressive end-of-life treatment to black patients with a DNR as to those without one. And this means they received inferior care. Because a steady stream of recent research reveals that dying patients subjected to invasive, aggressive technologies suffer more at the end of life, but they do not live longer than those who forego aggressive treatment and receive palliative care.

Does the ghost of Tuskegee haunt medical providers and exert subtle pressure to provide aggressive end-of-life care to black patients rather than risk the perception of withheld treatment? Do families of black patients think of Tuskegee and press for treatment they suspect a white patient would receive? Is one legacy of Tuskegee that doctors provide more burdensome treatment to their dying black patients, as some misguided reparation for past discrimination and abuse?

It would be unfortunate for the lesson of Tuskegee to become “treatment is always better than non-treatment.” That’s not the proper lesson of Tuskegee. Nor is the proper lesson that human research with a placebo arm is inherently unethical. No, the best lesson from the Tuskegee study is that decisions about treatment choices and decisions about participation in human research reside with patients, not doctors. The shameful ethical lapse at Tuskegee was not chiefly the failure to treat, but the failure to respect patients, inform them fully and obtain their voluntary consent. Exposure of the Tuskegee study led to widespread recognition that informed healthcare decision-making is a civil right. That civil right demands that doctors place patients’ decisions and patients’ values at the center of end-of-life care.

Not clearly recognizing the principle that was violated, doctors may be perpetuating the nightmare of Tuskegee at the end of life. This study shows that physicians who behave as though more is better and aggressive treatment is preferable to palliation and watchful waiting may impose needless suffering on black patients in their final days.

All patients have the right to comprehensive, candid information in order to make valid decisions and give informed consent. Decisions about end-of-life care must begin and end with the autonomous patient. Only when doctors put all patients – black, white or whatever — at the center of care, provide them full information, let them guide decisions and give honest consent, can they hope to banish the specter of Tuskegee from medical care.

Do You Want a Resuscitation Attempt?

            “Do Not Resuscitate.”  Doesn’t that order in a hospital chart mean you’re going to die? Doesn’t it mean doctors won’t prescribe medicines that may keep you alive? Wrong on both counts. “Do Not Resuscitate (DNR)” means only that should your heart stop, there will be no attempt to restart it with cardiopulmonary resuscitation (CPR). All other types of appropriate care and intervention are continued for patients that have DNR orders. Many patients with DNR orders recover, go home and live long lives.

            There are good reasons for having a DNR order even when a person is not terminally ill. The odds of surviving an in hospital resuscitation attempt are not great, even for healthy people. Only about 15% do. When old age, frailty, or multiple medical problems are present the odds go down significantly. Only 1 to 2% of this population survives long enough to leave the hospital. Of those leaving the hospital, even fewer leave without significant problems associated with the attempt. According to an article in Neurology, major brain damage occurs more than 50% of the time (Jaffe, AS. Neurology, 1993: 43:2173).

            CPR outside a hospital is even less successful. A less than 5% survival rate is common in many areas. Even in the best scenarios (immediate help by a trained bystander) only 19% of those who survived out of hospital CPR efforts did so without brain damage . Yet, as I noted in a previous blog, a living will and/or advanced directive asking that resuscitation not be performed is not adequate in many states. If you do not want CPR you must find out how your state regulates this!

            Just because there is an 85% CPR survival rate on our favorite television shows doesn’t make it so. It’s important that we all understand the facts about CPR. If you decide that CPR is not in your best interests, discuss your wishes with family members and your physician and make sure that the proper documents your state requires are completed. Requesting a DNR order is not giving up. It is not saying you want to or are ready to die. By itself it simply means that the odds of a successful attempt do not meet the criteria you have for quality of life. You have a right to determine what that means for yourself.

 

           

 

            

Living Will Does Not Prevent Unwanted Resuscitation Attempts

Fortunately, an experience I had while caring for my mother turned out to be educational instead of tragic. In the interest of helping others avoid a potential disaster in end of life plans I’m sharing it with you.

 I moved my mother who was suffering from Alzheimer’s disease to Montana from her home in Washington. She brought with her a living will and an advanced directive that clearly spelled out her wish to not have “heroic” measures taken for her. I dutifully attached a copy to the refrigerator door, put a copy in her purse, informed her caretakers of her wishes, and discussed the documents with her new doctor and gave him copies. Everything taken care of, right? If my mother’s heart stopped, there would be no attempt at resuscitation, right?  Not in Montana. And don’t depend on that being adequate in other states either.

 Imagine my dismay when her caretaker called me while I was out of town and said that mom had collapsed, that she (the caretaker) had called 911 but luckily mom had recovered by the time they arrived and so there was no need for resuscitation. After further investigation I found that, in Montana, emergency responders are obligated to begin resuscitation attempts despite what a living will, a caretaker, a relative or an advanced directive may say to the contrary.

 The only way emergency responders can legally refrain from a resuscitation attempt is if the person has “Comfort One” documents on their body (bracelet or necklace), in their wallet or attached to their refrigerator door.

According to the Association of Montana Health Care Providers

 “Based upon only your living will, you do not qualify for Comfort One status. However, if you have been diagnosed with a terminal condition, you qualify. Another option for qualification is to talk with your doctor about your medical treatment preferences and decide with him your options regarding DNR status. If your physician, based on medical and ethical guidelines, can order do-not-resuscitate status for you, then you will qualify for the program. Your living will is valid only in the hospital setting. If it is presented to EMS personnel, it will be disregarded.

 Montana Administrative Rule allows only physicians, hospitals, home health agencies, hospice agencies and long term care facilities to issue forms and bracelets to patients. The ultimate source of enrollment is with your physician as Comfort One requires a physician’s signature on the form.”

 Due to Mom’s age, her mental and physical condition and her living will I was able to easily obtain Comfort One status from her physician. But who knew? Obviously her physician had not thought to inform us about this critical regulation. I cannot imagine how angry I would have been had her collapse been followed by a near certain unsuccessful attempt at resuscitation (more on the subject of resuscitation success rates next time) with all its attendant pain and suffering.

 If you know someone who does not want a resuscitation attempt, let them know that, in order for their wishes to be met, they must contact their physician and enroll in the program. If you are such a person, call your physician now! If you live outside Montana investigate your state’s regulations regarding emergency responders’ obligations to attempt resuscitation. A phone call now may prevent a nasty surprise later.