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Initiating the End of Life Conversation

Rita Dichele - June 06, 2016 12:13 PM

As you might recall, the concept of an end of life discussion caused quite a disturbance when the Affordable Health Care Act was being formulated; subsequently, being withdrawn from the original bill.  It was, however, finally upheld by the Supreme Court.  As a result of this decision, Medicare determined it would reimburse physicians up to 30 minutes for having an end of life discussion starting January 1, 2016.  It is anticipated that private insurance carriers will also in the future reimburse as well.

Initiating the Conversation

Even though Medicare now reimburses for end of life discussions, it has been reported by the Conversation Stopper Poll that only 14% of physicians have done it so far; although, as many as 95% believe it should be done. At the same time, the Center for Disease Control has reported 75% of patients have failed to communicate to their physician their wishes to die at home and that only 25% individuals are granted this wish.

Keep in mind that initiating the conversation depends on the individual. The signs to consider that might warrant a discussion are hospice and palliative care in lieu of “curative care” measures. Other signs include multiple hospitalizations and repeated visits to the emergency room where the patient is medically stabilized but the condition remains; still affecting quality of life. Finally, the patient may want to avoid the hospital and request no more additional treatments.

All and all, there are other life events that can “trigger” the conversation; for instance, medical diagnoses/prognoses, deterioration/pain in conditions, aging, car accidents, etc.

Communicating Openly

An end of life discussion is a matter of communicating with a physician, typically primary care providers, regarding what types of medical measures you would like to be taken as you face deterioration in your health; nearing the end of life. The discussion, if you will, not only can be done between the patient and physician, but with family members as well. The purpose is to state your final wishes and to avoid any miscommunication that might result in unwanted heroic measures that prolong death.

It is an opportunity to speak openly and honestly about what you want. It is not what your physician wants. This is the forum to discuss with the physician your own values and beliefs surrounding life and living, and death and dying. The physician will listen, empathetic to your goals and priorities. However, it is the physician’s place to identify for you the physical compromises that might result from the type of medical care chosen.

Identifying Barriers

As we get older, the discussion of mortality might remain unspoken because of our own perceived notions that talking about death is a taboo topic we learned from society. At the same time, our health care providers might resist discussing death even though they are often faced with life and death decisions. In addition, physicians are taught in medical school to apply “curative” care. For instance, oncologists are trained to go to any lengths to find a cure for cancer. It is interesting to note that the Annals of Internal Medicine reported in a study that 90% of cancer patients have had formal end of life discussions. However, the discussions were only officially documented in the last five weeks of life.

Furthermore, after opponents of end of life discussions labeled them as a “death panel” conversation and would cause physicians to take “unethical” measures, perhaps supporting a rationing of care.  It is no wonder that this slowed down the idea of patients approaching their physicians to discuss end of life care. 

With all that being said, there are other barriers. For instance, discussing hospice and palliative care are sometimes overlooked because it is a sign to the patient the physician is giving up. Also, the physician might believe that this is a conflict with the Hippocratic Oath; the oath taken in medical school which supports the “curative” model of care.

Final Thoughts

When my mother was admitted to hospice care, a formal end of life discussion did not precipitate this huge measure marking her final milestone. The last year of my mom’s life resulted in chemotherapy, radiation, hip surgery, and numerous hospital stays for the flu and other respiratory illnesses. I kept pushing hard for her to have quality of life since she had expressed to me two things:  to die at home and in peace. Unfortunately, mom’s dementia prevented her from making the necessary choices to support her final wishes. Thus, she deferred to me to make these tough decisions  It was difficult and often I questioned my judgment.I was tired and felt my own health declining, certainly in spirit. It seemed that every time a health care crisis was resolved, another was not far behind. 

I often spoke to myself asking: “Where do you draw the line in the sand?” “When will it be time to call it quits?”  “Have I made the right decision for hospice care?”

So I remind myself and others, having end of life discussions are a medical necessity that should be included in wellness visits; especially for those we care for.  It helps avoid unnecessary stress for patients, family members and physicians.

It is a work in progress and can be updated as lives change and milestones met.

Rita Dichele holds three Master degrees in Counseling Psychology, Health Care Administration, and Human Services.  Ms. Dichele is certified in death & dying and bereavement from the Association for Death Education and Counseling (ADEC).  She is on faculty with A.T. Still University and instructs classes in grief work and long-term care.

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