Advanced Directives and Intellectual Disabilities: Part 2

Continued from  Part 1….

PART 2

Misuse of DNR/DNI and Advance Directives

As stated in Part 1, there are appropriate applications for the use of these orders and directives, but they can also lead to intentional abuses and dangerous or deadly misunderstandings. Here are a some real life examples:

In 2011, a report from the UK’s National Health Service Quality Care Commission found widespread use of DNR orders for patients who were elderly or disabled without the knowledge or consent of family members in violation of official policy that requires consultation before these orders are issued. (See news article in The Telegraph). In some cases,  DNR orders have been issued after family members have specifically indicated that they should not be used. (see Christian Concern, Backdoor Euthanasia in the NHS). While these issues have recently been explored in the UK, they have also arisen in the US, Canada, and many other countries. While this and other discussions  frequently focus on elderly patients, the same issues play out with children with disabilities.

Another issue that arises is that DNR and DNI orders are typically interpreted and applied in an all-or-nothing manner, and do not allow for different applications in different circumstances. Sujit Choudhry at Harvard Medical School points out, “The choice that we now offer patients between accepting or declining a DNR order is not sophisticated enough. We’re not giving them enough options.” (see Do Not Resuscitate Orders too Black-and-White).

A number of studies have shown that while a DNR order only explicitly limits CPR and a few other specific procedures, the presence of a DNR order frequently results in a general reduction in treatment. It has been demonstrated that patients with DNR orders are three times as likely to die within a given period than similar patients who do not have DNR orders. The increased death rate was still present when researchers controlled for how sick they were, and the causes of death were not related to the procedures limited by the DNR. This is commonly referred to as “medical abandonment,” when health care providers go through the motions without exerting the effort required. writing in the Journal of Medical Ethics, Vanpee and Swine (2004) refer to this:

Data in the literature have consistently highlighted major deficiencies, particularly the risk of ‘‘abandonment of the patient’’, where DNR orders are given in order to limit the use of cardiopulmonary resuscitation. Lipton showed in his study that although many DNR policies consider DNR status fully compatible with aggressive care, in current clinical practice the DNR order usually leads to less intensive care.

DNR orders have sometimes been interpreted very broadly to deny almost any kind of life sustaining treatment, including some that were not considered by or discussed with families. In various cases, people have been denied admission to critical care units, had ambulance personnel refuse to take the patient to the hospital, been denied antibiotics or other life-sustaining medication, had nursing personnel decide not to call the physician in a crisis, had personnel not suction secretions from their airways, been denied even short-term breathing assistance after a seizure, and been denied various other medical assistance.

In some cases, this is because of misunderstanding of the actual intent of the order. In other cases, it is less clear or more complicated why these things happen. In one case that came to my attention, a community-based care home called an ambulance for a patient. The ambulance arrived but refused to take the patient because of the DNR. The explanation given was that they believed that the hospital would not accept the patient because the patient could not be admitted to the Intensive Care Unit with a DNR order in place.

Here is an official definition of a DNR order issued by the State of Missouri Department of Mental Health and Developmental Disabilities:

Do Not Resuscitate (DNR) Orders: a medical order written by a physician to withhold CPR including breathing/ventilation by an assistive or mechanical means including but  not limited to, mouth­ to­ mouth, mouth ­to mask, bag­valve mask, endotracheal tube, ventilator and/or chest compressions, and/or defibrillation. [pdf]

While it is hopefully not the intent of the authors, it is not hard to see how this can be interpreted to mean a trach tube should not be re-inserted or cleared or interpreted not to provide even brief breathing assistance after a seizure or airway obstruction incident.

In many cases, DNR orders or advanced directives for withholding treatment have been issued in whole or in part because of the belief that people with intellectual disabilities have a poor quality of life or the belief that lifesaving care is not beneficial because it can prolong life but will not cure the intellectual disability or underlying syndrome. This is unethical and discriminatory.  In many cases, it is illegal but its lack of legality cannot reverse the harm done once a life is lost. In the Matter of Finn, 625 N.Y.S. 2d 809 (Sup., 1995), the New York State Supreme Court ruled against misuse of a DNR order for an individual with a developmental disability saying:

Although this resident’s life as a developmentally disabled person may seem a small possession from the perspective of some, it remains his possession and no person or court should substitute its judgment as to what would be an accept- able quality of life for another. His right to life is unquestionably implicated in any decision to deny him essential medical care.
The law will not open the door to the treatment of the mentally and developmentally disabled as second-class citizens, and will not look to any perceived possible diminution of their “quality of life” as a basis for the denial of life-saving treatment.

Some THOUGHTS & Recommendations

Every family needs to make their own decisions, and I do not want to impose my values on anyone else. Furthermore, I do not want to increase stress or promote feelings of guilt in anyone. I recognize that there may be appropriate times to allow a natural death, but I urge families to be cautious. Here are some things that I suggest for families of children or dependent adults with intensive health care needs:

A. Whether or not your child’s primary physician initiates a discussion about how far he or she would go to keep your loved one alive, you should discuss this with him or her. You need to be sure that you are on the same page, and it is better to know before a crisis occurs. If you are in strong disagreement, it may be wise to find another physician.

B. As previously stated, Advanced Directives limiting life-sustaining care are not appropriate for children or adults who are not competent. However, you may wish to include a statement indicating the kind of care you DO want. For example, if your child has a health care summary that travels with him or her, you may wish to say, “In case of emergency, please provide all reasonable life-sustaining care.”

C. If a DNR or DNI order has been written into your child’s medical record and you don’t want it there, ask that it be explicitly removed.

D. Because of the problems associated with  DNR/DNI orders, some hospitals and some doctors no longer use them at all. They are being replaced by a more sophisticated “levels of care statement” that makes a clearer statement of what kinds of care should and should not be provided. While these do not solve all the problems, they are a better alternative.

Also see later post….

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2 responses to “Advanced Directives and Intellectual Disabilities: Part 2

  1. Pingback: DNR Orders | MECP2 Duplication Syndrome Blog

  2. Pingback: Advanced Directives and Intellectual Disabilities: Part 1 | MECP2 Duplication Syndrome Blog

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