Although end-of-life planning is often associated with older adults, the information applies to all individuals over 18 years of age. In many cases, especially with young adults, patients are not aware of the function or importance of advanced directives and have not given any thought to the concept.
An advance directive is an affirmation made by a person, who is competent to make their own decisions, describing how they wish to be medically treated or not treated in the event they lose the capacity to communicate those wishes. This can include withholding or withdrawing life sustaining treatment, decisions regarding resuscitation, and can give authority to others to make these decisions on a patient’s behalf when they are not able. (Salins, N., Gursahani, R., Mathur, R., Iyer, S., Macaden, S., Simha, N., Mani, R.K., & Rajagopal, M.R., 2018)
The Patient Self-Determination Act (PSDA) is a federal law that obligates nearly all health care facilities to furnish patients with a written statement of their rights and to document the advance directives of patients when provided. The PSDA also mandates these health care facilities to educate their employees regarding advance directives. Under the PSDA it is unlawful to necessitate advance directives or deny patients who have them. (Campbell, J., 2020)
The PSDA has had a substantial impact of the end-of-life decision making process. Because of the presumption that extending life, with rare exception, is in a person’s best interest, the law is built with this as a default. When a person has an advanced directive in place that refuses treatment that may ultimately shorten their lives, health care providers now have an understanding of the treatment that may or may not be provided, instead of starting with the assumption of extending life. These decisions do not have to be defended or explained. (Shepherd, L., 2014)
State laws also impacts advance directives and end-of-life decisions. The law varies state by state. Some states may legally remove a patient from life support in the event it is decided to benefit the patient, but that discretion is limited. The general rule is that a person should be terminally ill or in an unconscious state that is believed to be permanent. However, some states allow the withdrawal of life support in patient’s with end-stage diseases or conditions and advanced dementia, and a few states do not restrict the jurisdiction to withdraw life-support to any specific medical condition. (Shepherd, L., 2014)
State laws differ significantly on an individual’s right to die and pain management, as well. When we talk about a person’s right to die, it is referring to a person’s right to end their life when and in a way they see fit. There are several methods and terms that are used when discussing this, including ‘aid in dying’, ‘physician-assisted suicide’, and ‘VSED’ (voluntarily stopping eating and drinking).
Pain management, in the setting of end-of-life decisions, include high-dose medications, medical marijuana, and palliative/total sedation. Palliative/total sedation, also known as terminal sedation, is used to alleviate extreme pain that is not helped by other medications, by keeping a dying person in a sedated state until death. (Glossary of terms, 2019) And, I’m sure we have all heard about the most recent debate regarding medical marijuana. While medical marijuana is now legal in almost three-quarters of the country, not all medical facilities will prescribe or even recommend this as a pain management option. (Hanson, K., nd) So, while the state laws regarding these issues can impact your end-of-life decisions, it is important to research your own state laws.
End of life decisions are part of advanced care planning. Advanced care planning and advanced directives are related, but not the same thing. Advanced directives are legal documents expressing your wishes regarding medical treatment, but advanced care planning is more than this. A significant step in advanced care planning is discussions with family members and any other person who would be involved in decisions regarding your health in the case of a critical illness or injury. The person(s) that you choose as your ‘Durable’ Power of Attorney (POA), will need to understand your wishes and be willing to take responsibility to ensure proper action is taken. (Advance Care Planning, 2018). The Power of Attorney is one of the documents considered to be an advanced directive, this gives legal authority to a person(s) to make decisions on your behalf when you are no longer able to do so. Another part of an advanced directive is a living will, which expresses specifically which medical treatment you want or do not want in the event of critical illness or injury.
Even though the PSDA makes it unlawful for healthcare facilities to require advance directives or deny patients who have them, there are implications of missing directives for dying patients. It can cause misunderstanding and conflict between family members who are attempting to determine what the patient would want. (Advance Care Planning, 2018) There is also research that shows a substantial difference in the medical care that is given to, or not given to patients with advanced directives versus patients without advanced directives. In patients without advanced directives, skilled nursing facilities see an increase of feeding tube placements and more difficult transfers to hospitals in patients with dementia. In the Veterans Affairs (VA) system, senior adults who have an advanced directive are less likely to die in a hospital setting versus community living centers. (Kossman, D. A., 2014)
Certain treatments and courses of action are impacted by a person’s religious and cultural beliefs. This is where medical ethics, religion/cultural beliefs, and regulations in healthcare intersect. Although death is an event that happens to everyone, regardless of background, one thing that every culture has in common is the hesitancy to discuss the end of one’s life. (Moss, K. O., Deutsch, N. L., Hollen, P. J., Rovnyak, V. G., Williams, I. C., & Rose, K. M., 2018) This is why it is so important to consider advanced planning early. One might ask if it is ethically responsible to remove a person from life support or assist them in dying. But beliefs in end-of-life issues are profoundly rooted in religion and cultural background and vary widely within socio-cultural contexts, and even generations. (Schweda, M., Schicktanz, S., Raz, A., & Silvers, A., 2017) This is why the laws vary from state-to-state, and are changing constantly. There are no right answers to these complex questions regarding end-of-life decisions. We can only do what is right for ourselves and our families.