When it comes to eldercare – or any care, for that matter – “heroic measures” is one of the most difficult topics to discuss and work through. Certainly no one wants to contemplate the line between life and death – but consider it we must, because if we do not, it is likely that we take those decisions out of our own hands and leave them to someone else. While it’s likely that this subject comes up when we, or someone we love, are facing issues of illness or advanced aging, the truth is that the right time to talk about heroic measures is always RIGHT now.
Let’s touch on the basics around the subject. To begin with, what does “heroic measures” mean? It typically refers to life sustaining practices or last ditch efforts to save a life. The perception of this phrase runs the gambit. To some, this calls to mind dire circumstances, including defibrillation (where they use the paddles to shock your heart), intubation (the breathing tube), artificial nutrition and hydration (Tube feeding through the stomach or through an IV). For others being hospitalized or even IV antibiotics are more extreme than they would wish for themselves or their loved ones. The truth is there is no hard fast rule as to what constitutes “heroic measures”. Ultimately it depends on what you believe and your goals around healthcare and end of life.
If you are the primary person responsible for an elderly or infirm family member, the following questions will help you get started when speaking with anyone from a facility who is requesting consent for a life prolonging procedure on someone you make decisions for:
Find out the name, title and how long the person has been working with your loved one.
Who you are talking to is important. The explanation could also be different based on their level of education and if they are just being asked to see your loved one as a consultant or if they are primarily responsible for their well being. If you are not 100% comfortable, request to speak with the primary physician that is coordinating care or if your loved one or the charge nurse.
Ask the care provider what they expect to accomplish with these measures.
Is it to restore the present state of health or is it to provide comfort? Will this measure cause more pain or discomfort? This will allow you to decide if the decision is in line with your family member's personal and medical goals.
What are the overall goals of care?
There are times that the treatment may not be in line with the overall goals of care that your loved one has discussed with you. Asking this question assists everyone in clarifying the overall goals and helps all involved to keep your loved one’s wishes at the forefront of all decision making.
Summarize and repeat what this person has said to you.
Remember, perception is everything, paraphrasing and reviewing ensures you have received the information exactly as the sender intended. If you are not 100% comfortable, or if there are other family members that you must relay this information to, ask if you can record the conversation.
Finally, ask yourself if these decisions are in line with the goals that your loved one has shared with you or what you think he or she would want if they were able to make their own choices with the facts you have available based on their present state of health?
Remember, whenever possible these are decisions to be made for yourself and for your loved ones long before they are critical. Use this article as a call to action and make your own wishes known to your family and loved ones. Memorialize these choices in a Health Care Proxy Form.
Whatever your role is in this process, remember that you are a trusted advocate when it comes to decision making around heroic measures. Your decisions must be based on the wishes of your loved one, not your own feelings. Bluntly, this is simply not your choice to make. You are there to be the words for the one that cannot speak or act for themselves. Your number one job is to be their advocate. Give yourself the freedom to act in that role. Don’t perpetuate the situation; this process can cause emotional stress and guilt that can last a lifetime – but that is definitely not what your loved one would wish for you. You are their trusted care provider, and that is an honor and something to be proud of at all stages of care providing and life.
Fern Wasserman RN, MSN, ANP, BC APRN, CLNC is the Founder and President of New York Legal Nurse Consultants, Inc. specializing in facilitating conversations on advance directives. Their highly trained Registered Professional Nurses are experienced and comfortable translating complicated medical information to families and loved ones in stressful situations. Fern has been a Registered Nurse since 1995 and received her Masters of Science in Nursing from Columbia University in 2001. Her professional experience includes: critical care, hospice, organ donation, education and research. She continues to be clinically active in the hospital setting. For information contact Fern@NewYorkLegalNurseConsultants.com or visit www.NewYorkLegalNurseConsultants.com