“The end of life deserves as much beauty, care, and respect as the beginning.”  – Andrew Murray

Maybe you have completed advance care documents at some point, either a living will, health care proxy or both, but do you remember what they say? Would you write the same thing today?

When completing an advance directive, considering what we might want in future hypothetical medical situations can be a challenge, and our preferences may evolve over time. These are living documents that should be revisited to make sure they continue to reflect our current wishes, especially when there is a change in health status.       

For a bit of background, in 1991 the federal Patient Self Determination Act was passed to ensure that a patient’s right to self-determination in health care decisions was protected. It gave competent adults the right to accept or reject medical treatments and to transfer that right to a proxy or surrogate if they are no longer able to speak for themselves.

A lot of public health effort has gone into encouraging people to complete their advance directives, and yet only about 1 in 3 adults in the U.S. have done so. These documents help to provide medical care that is consistent with a person’s values and preferences. They can also provide a profound sense of comfort to the family by helping to relieve some of the burden of making difficult medical decisions, which can be emotional, complex, and unpredictable.

Rhode Island Advance Directives

In Rhode Island there are three relevant Advance Care Directive forms. As part of the Rights of the Terminally Ill Act, there is a “Living Will Declaration Form” that directs healthcare providers to withhold or withdraw specific life-sustaining procedures in the event of an “incurable or irreversible condition.” 

The “Durable Power of Attorney for Health Care Statutory Form” (DPOAHC) is designed to grant authority to another person who would make healthcare decisions for you only if you were unable to do so yourself. This includes consent, refusal of consent or withdrawal of consent to care regarding medical treatments. Any limits to this authority can be specified, and statements regarding personal desires and special provisions can be included. These forms require two qualified witnesses or a notary signature. 

The third form, and probably the least familiar one, is the “Medical Orders for Life Sustaining Treatment” (MOLST). This form must be completed and signed by a physician, nurse practitioner or physician assistant, who has determined that the patient has a terminal condition. It directs the provision of specific life-sustaining measures, including resuscitation, intubation, artificial nutrition, artificial hydration, and hospital transfers. It is voluntary and was initiated in Rhode Island in 2014 to improve end of life care.

Most importantly, it is a medical order (like a prescription) that can follow the patient across healthcare settings and into the community, where it is also honored by emergency medical services (EMS). In the U.S., when the wishes of a patient are not known, the default is typically to treat.  Therefore, if someone has a clear preference about a treatment they do not want, a MOLST can provide that reassurance.

The Living Will and DPOAHC document our wishes about future medical care, while the MOLST provides a medical order for current medical treatment in the setting of a terminal illness and is recognized in hospitals, nursing homes, assisted living facilities, and the community.

Younger and relatively healthy individuals may understandably struggle to make decisions regarding future medical treatment. There is such a broad range of potential scenarios. Priority might be best placed on at least choosing a healthcare proxy.

In addition, ongoing discussions with the appointed proxy can help prepare them to make decisions if needed. Because preferences may change over time due to age, functional status (physical or cognitive), family influences, culture, clinician advice, finances, or caregiver burden, advance care planning should be an ongoing process requiring periodic review, discussion, and reassessment.

Rhode Island Advance Directives can be accessed and downloaded at:     

https://health.ri.gov/lifestages/death/about/advancedirectives/

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life Doula.  She can be reached at bonnie@bonnieevansdoula.com.