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Honoring someone's end-of-life decisions

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If you’ve created your advanced directive, notified your loved ones of your decision and obtained their buy-in, named a heath care surrogate and made sure your physician knew of your desire, you’d expect to get compliance with those very real and very legal decision but the Florida Health Care Administration has cited 15 Florida nursing homes with failure to honor advanced directives, a violation of Florida state law. 

In our own state RCCW 70.122.010 recognizes the fundamental rights of all adults to control the decisions related to their own health care including end-of-life decisions.  The laws of Washington state recognize an individual’s written directives or instructions from the individual’s authorized representative for the purposes of withholding or withdrawing life sustaining treatment.   If the hospital or doctor you are receiving care from has a disagreement with your wishes, they are required by law to make an effort to transfer you to a doctor or hospital that will honor your wishes.  Despite the law eight nursing homes in Washington were cited this year for violating a resident’s right to refuse treatment, refuse to take part in an experiment, or formulate advance directives.  Four had complaints against them for it.

Let’s look at a scenario that I borrowed heavily from at this site:

Mrs. Gray, an 83 year old woman living alone is brought to the ER by her neighbor because she has been experiencing chest pains.  She tells the ER physician that her heart stopped a couple months ago while she was in the ER and was brought back and then placed on a breathing machine for two weeks.  She goes on to say she never wants to go through that again and that if something happens to her while in the ER she doesn’t want to be sent to a nursing home but rather allowed to die.  Her paperwork for her advanced directive is not in the ER and her physician cannot be reached.  She has no family.  If Mrs. Gray suffers a cardiac arrest in the ER, is the ER physician required to comply with her stated wishes even though there are no written instructions?

The answer is yes but if you go to the link that I used for the question you’ll see that it’s not quite as simple as that because the ER doc has to make a determination that she’s mentally capable of making such a decision at the time.  Which is one reason you shouldn’t leave your wishes to a verbal discussion with your doctor.

Remember, in the first paragraph that 15 nursing homes had been cited for violating a person’s end of life decision?  Nearly all of the violations were the other way around.  People had made decisions to have someone make heroic efforts to save their lives and those directives were not followed.  There’s probably a two-fold problem here.  One is that doctors and other medical staff don’t make checking the file their first priority before committing to an action one way or the other and the other issue is that individuals and family members have a made for TV view of how effective those life saving methods are.  Americans exacerbate the issue by believing that dying is somehow losing, that allowing someone to die is to not love them as much as someone who would have done everything in their power to make sure they didn’t die.  That failing extends even to the health professionals.

So let’s look at some of those options.  Some life sustaining treatments that may be offered to you or to your representative in regards to your care include:

CPR-CPR can include chest compressions, the use of drugs or electric shock to restore the heartbeat and the placement of a tube in the windpipe to maintain breathing.  CPR alone is effective in only about 5 percent to 10 percent of cases according to WebMD.  Yet in a study in The Journal of the American Osteopathic Association, 81 percent of patients 70 and over believed that their chances of surviving inpatient CPR and leaving the hospital was 50 percent or better.  Almost a quarter of them believed that they had a 90 percent or better chance.  The authors noted that survival rates rarely exceeded 10 percent, that survival most predominately revealed 3 percent to 5 percent rates with some rates of 0 percent being reported.  The authors go on to say, “The emerging consensus is that CPR may not only be inappropriate therapy for some patients, it may constitute medical futility in many cases.”  This is especially true the older a patient is as the older you are the more likely you’ll experience complications from CPR including fractured ribs. The study results were replicated in a study from the Journal of Medical Ethics.

Diseases such as Parkinson’s, Alzheimer’s, stroke or Lou Gehrig disease often require families to make end-of-life decisions around ventilators and feeding tubes.  You can find more in-depth coverage of these topics here but I’ll cover them in brief here.

Respirator/Ventilator– These are machines that breathe for a person until they are able to do so on their own by moving air into the lungs.  They may be used after a surgery or when a person has an illness such as pneumonia, asthma, head injuries and drug overdose. Ventilators are also useful to support breathing during and after certain anesthetics, or simply providing breathing support and comfort after major surgery. In the typical case, the ventilator benefits the patient by helping him or her to breathe more effectively.

Ventilators can help a person breathe but they do not end the dying process.  A decision to use a ventilator may also include additional medical treatments such as sedation, blood tests and x-rays.  If you’re on the fence about someone’s end-of-life process, ventilation makes it harder emotionally and psychologically to stop ventilation once it has begun.

Artificial Nutrition and Hydration-Food and/or fluids are provided either directly or indirectly into the stomach through a feeding tube or through an intravenous line.  This method may be used when there is a temporary loss of eating or digestive function.  The most basic of human functions is to provide food or water to another human but doing so may actually prolong suffering while not doing so can make it easier for the patient to breathe and may cut down on the number of bedsores and other skin related ailments.

All of these options may only prolong the process of dying and may be unsuitable for those in a persistent vegetative state or for those with an incurable illness as they only prolong the process of dying.

We began this discussion by talking about the written and legal options you have for making your end-of-life decisions known.  It’s difficult to ascertain the appropriateness of each treatment option until you’re in the midst of the decision.  Every family will feel differently about the benefits and costs associated with each treatment option.  That’s why it’s so important for families to have discussed the options not just among themselves but also with any other individual that may become a decision maker in a time of crisis (such as a health care professional) and seriously contemplated when one option might be availed of and when another might long before the family is in a crisis situation and trying to determine what a loved one would want.  That’s one of the reasons why choosing to create a LifePlan can be so beneficial to the individual and to that person’s loved ones.  Having those questions out of the way should a crisis situation occur will go a long way to resolving the issues of life and death in a manner that will bring comfort to all the parties involved regardless of what those decisions are.


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