Until a few decades ago, dying from infections, diseases, or accidents was much more common than it is now, when people live to ripe old ages despite suffering through many chronic illnesses. Since the widespread introduction of cardiopulmonary resuscitation in the seventies, things have become a bit more complicated in regards of health care decisions. Simply because we can keep people alive doesn’t mean we should necessarily do so.
Perhaps Aunt Rose wanted to be intubated and kept alive despite being unresponsive in a lonely hospital bed with no quality of life left after she suffered a severe stroke, but maybe it was her wish to die peacefully at home instead of having a breathing tube put down her throat and left to suffer until she finally drew her last breath a few months later. But there is no way to tell unless she told us her wishes before she had the stroke!
Death was seen as a natural part of life until a few decades ago. But today in many parts of the USA, death is viewed as a “disaster” to be avoided at all cost. As a hospice nurse, I have seen many tragic situations in which patients and families have never discussed what to do when death is near. This is especially unfortunate if a loved one is so sick that they cannot speak for themselves and the family who has to make the decisions has no idea what their loved one’s wishes are regarding health care decisions. The result is confusion, anxiety, guilt, suffering, difficult and painful procedures, distress, and even disagreements and fights within the family—but all of this can be avoided by communicating openly in advance.
Watching a loved one go through the agony of a resuscitation and intubation is hard enough, but having to watch while second guessing that loved one’s desire to be resuscitated and intubated is simply a horrible experience.
In the USA a patient has several rights as outlined in the Patient’s Bill of Rights. One of those rights is to complete a Health Care Proxy – a legal document in which a patient appoints someone (their Health Care Agent) to make decisions for them if they are unable to do so for themselves due to illness or incapacity. This means the patient can legally appoint and document a Health Care Agent while the patient is still healthy. The Health Care Agent/Health Care Proxy will only take effect once the patient is incapacitated and is no longer able to make decisions or speak for themselves.
Another option is a Living Will, a legal document in which a person lists instructions for medical treatment and what actions should be taken if they are no longer able to make decisions for themselves because of illness or incapacity. The Living Will goes into effect when the person is unable to speak for themself. The Health Care Agent should know the patient’s wishes listed in the Living Will. It is wise to keep a copy of both documents in a secure place that is easily accessible.
I completed these documents a few years ago and my Health Care Agents know my wishes very well and will see to them. It assures me that I will be able to die without life-prolonging interventions and with more dignity because my Health Care Agents will speak up for me and follow my directions, letting us all be at peace during the end of my life.
I encourage you to think about your own wishes surrounding the end of your life and have a discussion with your loved ones, letting them know your plans. Do you want to be resuscitated if your heart stops beating? Do you want to be intubated and have a breathing tube put down your throat if you are having difficulty breathing due to illness? Do you want a feeding tube put into your stomach if you are unable to eat so you can survive longer? Or do you want to let nature take its course? There’s a lot to consider and a lot to discuss. The book “If I Only Knew” by Fern Baudo can be a great help if you want to learn more about Advanced Directives and choosing a Health Care Agent.
I met Fern Baudo a few years ago through my work in Hospice Care in NYC. She is an Adult Health Nurse Practitioner who received a certificate from Respecting Choices for completing the First Steps Advance Care Planning Facilitator and Trainer course. Her clinical nursing expertise is in hospice, organ donation, and critical care. Fern is the President and founder of Fern Baudo Adult Health Nurse Practitioner PC. She provides professional speaking engagements, and educational seminars for the community on Advance Care Planning. She also serves the community by providing private consultations on Advance Care Planning.
She is an active participant in the New York State coalition for National Health Care Decisions Day.
Fern kindly sent me her list of important things to consider when completing a Health Care Proxy and choosing your Health Care Agent:
5 items to consider when completing a Health Care Proxy – by Fern Baudo RN MSN ANP BC
Consider who you are appointing:
- Will they be there when you are ill and can’t speak for yourself
- Are they able to keep a cool head – when the emotions are hot
Share your wishes with this person:
- Can they handle the discussion
- Do you feel comfortable speaking with them about your choices
Let people know:
- Let people know you who you appointed as your health care agent
- Make sure your spouse and siblings know
Distribute the document:
- Distribute the document- to family, loved ones, your doctor, the hospital you are likely to attend, keep a copy with you.
- Consider electronic copies as well
- Email a copy to the person you appointed as your health care agent
Talk about what you want-Use a narrative (explain what you want) and why over a word. Make it a dialogue, permit them to ask questions:
- Tell your appointed agent
- Tell your family
Fern Baudo RN MSN ANP BC is the author of the book: “If I Only Knew: Making Medical Decisions as we Navigate Through Life’s Journey”.
Written by Eliane Baggenstos, owner of bodono, Registered Nurse, and Certified Health Coach with certification in Plant-Based Nutrition by the Cornell University and Evidence-based Health Coaching for Healthcare Providers by the National Society of Health Coaches, Licensed Massage Therapist with certifications in Advanced Sports Massage and Medical Massage.