The PDF, which includes endnotes and footnotes, in which this article appears can be found in Bifocal, Vol. 45 Issue 6.
Most would agree that it is important to plan for one’s end-of-life affairs: preparing a last-will-and-testament, discussing burial preferences, and ensuring loved ones are aware of such choices. While serious, some of these topics can come up in casual conversation. In an especially scenic spot a person may say, “I want my ashes scattered here” or at a family gathering when someone compliments a family heirloom, “I’ll leave that to you in my will.” The decision to be an organ donor is often as simple as checking a box when obtaining a driver’s license or ID.
On an intellectual level these comments and choices acknowledge that life will end and there are preparations to make, but it can miss a crucial part of planning: medical decisions for end-of-life. Medical decision making at the end-of-life actually starts well in advance of a terminal diagnosis and involves communicating what you would like your health care providers to do in the event of a life-limiting injury or illness. These discussions and decisions are not just important to clients but to all individuals. Life, and its ending, are universal human experiences. For this reason, our discussion today is not just focused on your role as attorneys but also as future care recipients.
Discussing one’s preferences for medical treatment is important to ensure that you receive the medical care that you want, avoid unnecessary suffering, and reduce stress and confusion for your loved ones during a medical crisis. It is important for individuals to discuss their treatment preferences across the lifespan, as unexpected accidents or illnesses can occur at any age. It is also important to remember that preferences can change over time and will need to be updated accordingly. Documenting such preferences assumes that individuals have access to care and medical insurance. Addressing these needs for individuals without such privileges remains important but beyond the scope of this article.
Advance Health Care Planning
Advance health care planning provides a platform to communicate preferences for medical treatment. Advance directive (AD) forms are written legal documents that articulate medical choices in the event that the individual is unable to communicate or unable to make these decisions themselves. Often there are multiple documents involved in advance health care planning which can add a layer of complexity to the process. AD forms vary by state, so it is important to be familiar with state specific forms (e.g., some may require witnesses to sign or be notarized). An AD will have two essential elements: identifying the types of treatment you would like and the person/people you want to help carry out these decisions should you be unable to express your needs for any reason (i.e., designated power of attorney for healthcare).
Medical or Health Care Power of Attorney
There are several names for a medical power of attorney that can vary by state or form being completed. Common names are health care proxy, health care surrogate decision maker, or health care representative. It is important for the person to select someone they trust to carry out their choices and communicate with their health care team. This person may be tasked to make decisions on the patient’s behalf, which are often based on the individual’s wishes and values. Talking with loved ones about end-of-life preferences and medical care can be challenging and emotionally charged. It is helpful for the individual to consider who they think is best positioned to advocate for the patient’s choices and navigate conflicts or disagreements that may arise. Some forms allow the identification of an alternate or secondary medical power of attorney.
Medical Treatment Preferences
An AD will ask to identify one’s preference for various medical interventions. While not an exhaustive list, these medical interventions may include: CPR, mechanical ventilation, tube feeding, dialysis, antibiotics or antiviral medications, transfers to the emergency room or hospital, pain management, and comfort focused care. Some AD forms allow the individual to articulate their specific preferences (i.e., the person may opt for a trial of mechanical ventilation or tube feeding in the short term rather than a blanket “yes” or “no”). An AD may also inquire about your preferences for organ and tissue donation or donating one’s body to science. The decision about whether or not to receive life-saving interventions refers to one’s “code status”. Deciding to forgo life-saving interventions (e.g., intubation or CPR), is often termed “DNR/DNI” (do not resuscitate or intubate). Making this decision clear to family and medical teams can be hugely helpful in guiding care.
In addition to the AD, health care systems also encourage individuals to have available (especially at home) a Physician Orders for Life-Sustaining Treatments (POLST), also known in some states as Medical Orders for Life-Sustaining Treatment (MOLST). This form is important should a medical crisis happen at home because it informs first responders of what the individual wants in terms of medical interventions. Without this, a person who may not want resuscitation but does not have this in writing, may receive life-saving procedures that go against their wishes. If the person had this form readily available and visible, first responders would then know how to honor their wishes. It remains critical that health care providers and any hospitals or long-term care facilities have copies of these documents. Individuals may revise or revoke these documents at any time.
Important Considerations in Advance Care Planning
John F. Kennedy said, “The best time to fix the roof is when the sun is shining”. This sentiment aptly applies to advance care planning. Discussing death and various medical interventions at end-of-life may feel overwhelming, morbid, and macabre to some people. Avoiding these decisions and conversations, however, can create more problems down the line. Addressing care needs during a serious medical crisis or at end-of-life is challenging enough. Without clear guidance from the patient, the situation becomes increasingly more complicated and challenging for the loved ones tasked with making big decisions. Additionally, things can feel chaotic and progress quickly in hospital settings, which can heighten the stress of the situation.
It remains important for individuals and families to discuss care preferences long before a terminal diagnosis or crisis event. Short of completing an AD, verbal discussions with loved ones can be incredibly helpful. If a family knows that their loved one “does not want to be hooked up to machines,” they can share that preference with the medical team. Sharing such values with the medical team, whether in writing or verbally, can help guide medical decisions. Knowing that the family adhered to the individual’s wishes can be comforting to all and mitigate the tendency to ask “what if” questions or second guess their decision.
It is also incredibly helpful to consider personal values with respect to medical treatment. Does the individual value longevity, autonomy, and/or comfort? Are they fiercely independent and determined to live on their own, or are they willing to consider assisted living or skilled nursing facilities? As much as we would like to maximize all three of these values, advanced illness may require medical teams to prioritize some values over others. Talking with health care providers, including palliative care, can be helpful in exploring these values.