Although discussing end of life care is often avoided in the general robust working population, working in the healthcare industry has made me highly aware of the importance of making these difficult decisions before it is too late.
Typically, when a patient is admitted to the hospital, options for advanced directives are presented and decisions about said directives are encouraged. As some background, advanced directives are more or less directions that your doctors should follow regarding your care if you should be unable to verbalize wants and desires based on medical condition.
The various types of advanced directives that exist include the living will, durable power of attorney, and do not resuscitate orders. The living will gives specific instruction on what care to or not to provide prior to an event that deems a person incapable of making their own decision due to coma or other terminal illness. A living will differs from a durable power of attorney in that when a durable power of attorney is assigned, that person/those people (typically a family member or close friend) are responsible for making all medical decisions for the incapacitated person. In addition, a person can preemptively opt for a do not resuscitate order as well that gives specific direction to not resuscitate a patient via CPR if the need arises.
Prompted by reports of miscommunication mishaps between healthcare personnel regarding end of life issues on patients with various advanced directives, I have a renewed appreciation for the importance as a healthcare provider of knowing the difference between the options and try to have a clear understanding of what my patient’s desires are.
Now, these somewhat appearing clear-cut options become more complicated when working with a pediatric population. A parent of any patient under the age of 18 has legal custody, legal decision-making ability, and basically the right to choose between life and death for their child. It is unfortunate and devastating for a parent of an infant that is being kept alive by life support means including tubes, wires, and drains to make a decision of whether or not quality of life for their child should overrule quantity. Every parent makes these decisions differently based on emotions, knowledge-base, values, religious beliefs, etc., and in reality there is no right or wrong answer. As healthcare providers it is our responsibility to appropriately educate the parents on their options, support them if they need a shoulder to lean on, and maintain an unbiased opinion when the final decision is made.
To further complicate the situation, what does a healthcare provider do when the terminally ill child is old enough to understand the implications of their illness and disagrees with the parent on what care should be provided? For example, a 16-year old girl who has been fighting cancer for five years is given a terminal prognosis. She is sick of surgeries, tired of chemo, does not want to undergo the pain that she remembers from being intubated previously, and wants to enjoy the last few months of her life without bother from medical attention. Her mother vehemently disagrees with her and wants any and all last ditch efforts done to prolong her daughter’s life.
Like shown in “My Sister’s Keeper,” in extreme cases patients can file for medical emancipation from their parents. However, that is the extreme and the minority. Our role as nurses in cases such as these is to facilitate communication, effective communication for that matter, between the patient and her parents. Get social work involved, get child life specialists involved, get the doctors to deliver their medical opinion to both sides. Allow alone time for the family to spend sacred moments together. And be there to listen. To both sides. Because although both sides will probably need you for very different reasons, both sides will ultimately need you. The hope is that eventually the family can come to an agreement that is best for the patient, so nobody bears the burden of guilt or remorse when end of life draws near.
Although nobody likes to talk about end of life, as healthcare providers we are unfortunately forced into end of life encounters on a regular basis. The more comfortable we are with talking about it the more aid we can provide patients and families when they are forced to deal with it. Having your patient prepared in advance can avert further crises from developing in critical situations. I feel as though nurses can have such an impact on patients and their families at the end of life and we can make a difference in more ways than meets the eye.