Advance care planning: let your voice be heard
By Rachael Huyck, MSW, LISW
In the mid-90s, while working with World War II Veterans in their final days, my team and I sought to create documents (formally referred to as “living wills”) that would put in writing the vets’ choices about specific life-sustaining treatment. The process was frustrating for the veterans. How can every possible situation be considered? How can anyone know his or her wishes if and when faced with a serious accident, or a severe or terminal illness?
The pain and suffering associated with the dying process may include not only the physical symptoms associated with the underlying condition – or even the treatment itself – but also the psychological effects of anxiety, depression, and feelings of fear, sadness or loneliness, and/or spiritual distress. Studies have shown that there is rising concern among adults that they will be kept alive beyond the point of having any reasonable possibility of recovery. They are also concerned about no longer knowing who they are, and no longer being able to recognize their loved ones.
While it is not an easy topic to consider, it is important for every adult age 18 and older to have a health care directive, a written plan for loved ones and health providers to follow. The health care directive ensures your wishes are known if a time comes when you cannot speak for yourself. Advance care planning is a process which helps you think about, talk about and write down choices, values, goals, beliefs and traditions for future health care decisions.
Unlike the discussions I had 25 years ago with veterans, advance care planning focuses on “living well” and what makes your life worth living to you. It helps you to shape the kind of care, interventions, and withdrawal of interventions you’d prefer. You can also address rituals, music, prayer, etc. you would like, as well as other end-of-life decisions such as organ/body donation.
In your “plan” you will select a health care agent (HCA) to speak for you in the event you are unable to speak for yourself. The discussion with your HCA about your wishes is the most important element of advance care planning, as that person will be making decisions and executing the choices you want should the need arise. Ideally, this discussion will lead to documenting your wishes in a health care directive.
Research shows the positive outcomes of advance care planning, including improvement in symptoms of depression; an increase in the patient’s beliefs that physicians care more and understand their preferences; better holistic preparation for death; lessening the burden on loved ones and decreasing the family stress associated with decisions to withdraw treatment. The focus shifts from ‘crisis in the moment’ to caring and honoring the individual.
As I wrote my own directive my values, faith and preferences became clear. It gave me a sense of having some control over a future situation that could possibly be out of my control. It took the burden of decisions off my spouse and sons, and it grants me the respect and dignity I want in my life and in my death. I hope that everyone will feel the honoring presence of those around them, especially in their last days. You can have this peace by starting a discussion on advance care planning, leading to the completion and distribution of a health care directive.
For more Information and to get started:
- Visit the Honoring Choices website to get more information, watch videos or invite a speaker to come to you.
- Download health care directives in English, Hmong, Russian, Spanish or Somali here. You’ll find the short and long versions of the documents as well as definitions & terms, and guides.
- Ask your health care providers for the Honoring Choices Advance Care Directives which are being used by most Twin Cities providers and an increasing number of health care centers across Minnesota.
Will – A legal document created by a competent adult to specify how to divide assets and property after death.
Living Will –a universal term for an advance directive. It is written instructions that tell physicians and family members what life-sustaining treatment one does and does not want at some future time if a person becomes unable to make decisions. It is the most widely recognized term by the general public. It is limited by the scope of situations that are written into it. (Note: some people confuse a ‘legal will’ with a ‘living will.’)
Health Care Directive or Advance Directive – any statement, oral or written, that indicates how he or she would want medical decisions to be made in the event they are unable to make them personally. The preferred directive is one that designates a person who will make specific decisions.
POLST – a form that translates the health care directive into a medical order that can be followed to EMTs and healthcare providers, generally used at end of life, requires the primary physician signature to be valid
Power of Attorney – a legal document in which one person (the principle) gives another person the authority to make specified financial decisions or to assume certain financial responsibilities. If the authority extends to a time when the principal is incapacitated or incompetent, this person is a ‘durable power of attorney.’ This document must be notarized and is null and void upon the death of the principle.
Power of Attorney for Healthcare or Health Care Agent – a legal document where a principal appoints someone else (POAH or HCA) to make healthcare decisions in the event that the principal becomes incapable of doing so. This document allows the principal to provide instructions for the person they appoint. This document can be notarized OR signed by two witnesses.
Rachael Huyck is a licensed social worker for 27 years, practicing across diverse practice settings including child welfare, advocacy in the courts, trauma, addiction and recovery, mental health, domestic violence, racial reconciliation and work with chronic and terminally ill patients. She earned her BA degree from St. Catherine University and her Masters in Social Work from the University of Minnesota.