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“Dying as Desired”

Lexington Medical Society Essay Contest 2015
Active Physician: Charles G. Ison, MD

“The day of my birth, my death began its walk. It is walking toward me, without hurrying.”
–Jean Cocteau, “Postambule”

We are all going to die. If one wants to bet on a sure thing, bet on that cold fact. As medical professionals, we all secretly believe that we are helping our patients’ battle death. We see ourselves as our patients’ indispensable allies in fighting a war that, to be blunt, they will ultimately lose.

Healthcare professionals must decide, along with the patient and his family, when care switches from curative to end-of-life care. We also need to decide what constitutes a desired quality of life at its end. All three parties, and society in general, must decide on how to reconcile these two decisions with how much they will cost and who will ultimately pay for them.

There comes a time– especially for those with chronic, progressive health conditions– where nothing can be done from a medical perspective to cure a patient or improve her health. We may know at which point that occurs in a given disease process, but this does not mean that the patient or her family are ready to accept this.

The matter can be explained as tactfully as possible, but they may feel like they are surrendering if they agree. Some may be blessed with an abundance of hope. They may be people of strong faith who are expecting a miracle to change everything. We are human: there is absolutely nothing wrong with believing these things. These people often become more accepting of initiating end-of-life care as their conditions deteriorate, but some may not.

Some patients and family members are pessimists—or “realists” as they may claim—who may be ready to give up on care too soon. They should be tactfully persuaded not to stop looking for a cure for their condition. Attitude is important, but it is not the only factor involved in dying. Otherwise quite a few people would be immortal.

At a minimum, the healthcare providers and the patient should decide together when it is time for end-of-life care. One hopes that the family would respect the patient’s wishes in this case. If the patient is incapacitated, the family’s opinions become a lot more important. Of course, a patient may have made his decision about when to initiate end-of-life care and what kind should be given in this event. He may have also assigned power-of-attorney to a relative or trusted friend.

Once end-of-life care is initiated, the patient, the medical professionals, and the family should decide on what will constitute good quality of life for the patient. Since it is the end of the patient’s life, her desires should be given priority. It is up to the healthcare providers and the family to help facilitate this expected quality of life for the patient.

Most people would want to be able to do what they wanted to do, see who they wanted to see, and remain lucid and as pain-free as possible at the end of their lives. These are all laudable goals that can serve as optimizations or ideals.

Medical professionals must balance the patient’s desires with what is realistic from a healthcare standpoint for them to actually do. Since at this point all are hopefully in agreement that the patient is dying, somewhat different rules can be applied. If the patient wants to try riding a horse, let him. If a patient decides that he wants to banter with his brother without falling asleep, help him decrease his pain medications safely.

Assisted suicide is now legal in some countries and some states. There are patients and there are healthcare providers that would have no qualms in making this a part of end-of-life care. Others may find it disturbing or even morally abhorrent. At this time it is a very controversial part of care. If the patient or a medical professional disagrees with this, then a new therapeutic alliance with a different healthcare provider may be necessary.

Family members may have been very protective and even somewhat authoritarian toward the patient before she entered end-of-life care. This type of role-reversal may be the hardest on them. They must also give her wishes priority –within reason, of course. They should treasure the time they have left with the patient as best they can.

In our society, dying costs money. Quite a lot of it is spent in a patient’s final days in the intensive care unit, or on that last trip to the emergency department.

Those who know that they are at the end of their lives often have the luxury of deciding where they get to die. If the patient desires it, he can die at home surrounded by family. This is less costly than weeks on a ventilator. If a patient desires it, though, emergency care can be sought. That adds to the cost of dying and ties up resources, but it is what the patient perceives as quality of life at that time.

Hopefully healthcare providers –and family members– have very carefully gone over directives for end-of-life care in multiple scenarios with the patient. As mentioned above, living wills and power-of-attorney designation can help ensure that a patient’s last wishes are carried out as she sees fit. This also saves money and resources by not providing care that the patient does not desire. If a patient at the end of her life wants everything done for her should she become obtunded, then it is the responsibility of the medical professionals to help her understand the ramifications of this. If she does not change her mind, so be it.

Both healthcare providers and family members can sound very callous when mentioning the cost of healthcare around or concerning a dying patient. The natural inclination for both parties is to want as much healthcare as possible for someone who is critically ill, even if he is dying. If no advanced directives have been given, then it becomes the responsibility of the patient’s family to communicate what they think his desires for end-of-life healthcare were. The medical professionals can help the family, once again, to understand the ramifications of these decisions for the patient. In this case, if the family wants more instead of less healthcare, then not knowing or having the patient’s delegated desires, the family’s desires should be followed. Cost should only enter into the conversation if the healthcare providers are asked by the family about it.

In the end, someone is going to have to pay for end-of-life care. The patient will not need to worry, since he will be dead. His estate will have to pay what any insurance –Medicare or otherwise—does not.

Anything that is not paid by the patient or by insurance carriers will either be paid by state programs or swallowed by the medical professionals and healthcare facilities involved in her end-of-life care. These costs are passed along to society as a whole through increased taxes, decreased services, and increased healthcare charges.

The end of life is just as important a part of life as any other portion of it. In our society, for a variety of reasons—including, ironically, better healthcare—dying may be by far the most expensive part of our lives. People want to die with dignity. They want the quality of the last part of their lives to be just as good as all the parts that came before. Deciding beforehand where and how they want to spend the end of their lives, along with the input of medical providers and family members, can go a long way in making sure this happens. Many such patients would choose to die at home surrounded by loved ones in hospice care rather than in an intensive care unit. This not only saves society money and resources, it also increases the quality of life for patients by allowing them to choose their end-of-life care as they desire it. It is grim to associate dying with a win-win scenario, but perhaps in this case it is strangely appropriate.

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