Advance Medical Directives and End of Life Decisions
Too many times, as a physician, I have watched families struggle to make decisions on behalf of loved ones who are unable to make those difficult choices for themselves. Sometimes it is peaceful and clear but, oftentimes, family members agonize or even fight over what they feel is the right thing to do. You can ease this burden for those who will survive you by thinking through some basic issues now, and making your end of life preferences clear.
We refer to these decisions and issues, collectively, as “advance medical directives.” Despite encouragement from medical and legal professionals, only about 25% of seniors have spelled out advance directives to guide their families and healthcare providers. Specifying your own personal advance medical directives--instructions about how you want to be treated from a medical standpoint if you are incapacitated--will help to ensure that your preferences are known and respected.
We all know from experience that emotions can run high during times of crisis. This can be especially true when someone you love is facing a medical emergency or death. The best time to make critical decisions is when there is not a crisis--when everyone can think clearly and have rational discussions about potentially uncomfortable issues.
Who Should You Talk To?
Imagine the group of people who would likely surround your bed to comfort and care for you if you fell gravely ill— the people who are most concerned about your wellbeing and who would be involved in making medical decisions for you if you could not do so. They might include family members, close friends, your healthcare provider(s), your clergy or spiritual leader, and perhaps your attorney. Make a list of those people, and make a point of having an individual discussion with each one of them to share your desires and preferences.
Now, you may find that some are resistant to such serious talk; they may feel it is unnecessary, or “bad luck,” or perhaps even morbid. These are probably the folks who most need to hear your message. They may need to be convinced that, even though your beliefs and your wishes may conflict with theirs, you sincerely want them to understand and respect the way you’d like to be treated if the time comes when you’re not able to speak for yourself.
What Kind of Documentation Do You Need?
Do you need complicated and expensive legal documents prepared by an attorney? Not necessarily. In fact, sometimes these documents specify such minute detail or hard and fast rules that they’re very difficult to follow in any practical manner. In end of life or critical care situations, the question of “the right thing to do” is rarely black and white. It isn’t realistic to plan on “pulling the plug” after a specified number of hours or days—the nuances of real life situations are much more subtle than that; there can be many interrelated circumstances that cannot be anticipated or planned for.
You have probably heard the term, “Living Will.” In the state of Colorado, there is a document technically named “Declaration as to Medical or Surgical Treatment” that is typically referred to as a living will. It specifies how you wish to be treated if you are faced with a “terminal condition.” Unfortunately, this is a vague term and this particular Colorado legal form does not provide much specific guidance to a healthcare professional. As I physician, I have not found it particularly helpful and believe there are more effective alternatives.
The Medical Orders for Scope of Treatment (MOST) tool was approved for implementation in Colorado in 2010. MOST, a standardized form for documenting treatment preferences, is available for download at www.ColoradoAdvanceDirectives.com .
“The Five Wishes” is a wonderful living will document available through a non-profit organization called Aging with Dignity. This workbook guides you through the issues and decisions you need to consider; it is available for $5 through their website at www.AgingWithDignity.org , or by phone at 888-5WISHES. When property executed, “The Five Wishes” becomes a legal document in the state of Colorado.
A “Medical Power of Attorney” is a useful legal document. It designates an “agent” who will make medical decisions on your behalf if you are unable to do so. It makes sense, then, that the person you choose to be your agent understands, respects, and intends to carry out your wishes if it becomes necessary for him/her to do so. You can make this document as specific as you wish, and it applies to any medical condition in which you are incapacitated—not just terminal ones.
Another alternative is to simply type or hand-write and sign a document stating a list of your preferences.
But remember, any document stuck in a drawer or filing cabinet will not be very useful if your loved ones and medical providers don’t know that it’s there or what it says. Regardless of what kind of documentation you choose to use, make copies for your family members, your physician, and your attorney if you have one. And take copies along if you are admitted to the hospital.
What are “Comfort Measures Only?”
The term “Comfort Measures Only” means that medical treatment for a dying person will be limited to alleviating pain and suffering. Interventions intended to cure disease states or symptoms, or to prolong life, will stop and treatment will focus on keeping the patient as comfortable as possible. This can be appropriate if your condition is likely to be irreversible, if keeping you alive is not a viable option, or if your quality of life will no longer be acceptable to you.
What Interventions Should I Consider?
There are three key areas, referred to as “life sustaining treatment,” that I suggest you should consider, document, and discuss. These include whether or not you wish to:
- receive cardiopulmonary resuscitation (“CPR”), and under what circumstances;
- be put on a breathing machine or ventilator; and
- be assisted nutritionally with a feeding tube.
Cardiopulmonary Resuscitation (“CPR”). CPR is an intervention that attempts to revive you if your heart and/or lungs stop functioning. You can specify that you do not wish to be resuscitated under certain circumstances. You may also have heard of a “DNR,” which stands for “Do Not Resuscitate.”
The vast majority of my patients over the years have based their CPR directives on the following criteria:
- “If I’m generally healthy, vital, and functioning well but my heart and/or lungs stop for some reason, then by all means, give me CPR and try to keep me alive.”
- "If I have serious complex medical problems or advanced dementia and the potential outcome is likely to be poor, then don’t give me CPR.”
If you want a CPR Directive form, you can get one from the Colorado Department of Health or from your physician although it is not necessary if your wishes are otherwise known. However, if you are adamant about not receiving CPR under any circumstances, you will want to wear a bracelet or pendant that says so. Otherwise, if you go into cardiac arrest in public, paramedics are obliged to perform CPR.
Breathing Machines. This is one that many people don’t think about. A breathing machine, or ventilator, is used to mechanically move air into and out of the lungs if you are unable to breathe on your own. They are most often used in the intensive care unit following surgery or to help you recover from serious medical conditions.
Here’s one way to think about being assisted by a ventilator--short-term vs. long-term:
- “Short-term, as long as the prognosis is reasonably good and I’m getting better and stronger, keep me on the breathing machine.”
- “After a week or two, if I’m getting worse and the prognosis is not good, I don’t want to be kept alive with a breathing machine.”
Feeding Tubes. Feeding tubes give your body liquid nutrition if you are unable to swallow. They are most often used in nursing homes for patients who have chronic degenerative diseases such as advanced Parkinson’s or Alzheimer’s Disease, or for those who have suffered a debilitating stroke. A nasogastric, or NG-tube, goes through the nose; a gastric, or G-tube, goes through a small incision directly into the stomach.
Many patients think of it like this:
- “If my condition is temporary, I’m likely to get better, and a feeding tube is required to nourish me, then use it.”
- “If I am bed-bound, don’t recognize anyone, and have lost the ability to feed myself or to be fed by someone else, then don’t use a feeding tube. Give me comfort measures instead.”
While these are some common sentiments I’ve experienced with a majority of my patients, your own desires may be somewhat different or radically different. You may wish to be kept alive under any circumstances using any interventions available. Or, at the other end of the spectrum, you may desire to pass away naturally with no intervention or “heroic measures” whatsoever. These decisions are very personal and individual. The important thing is that you make your preferences known now.
- Even if you have advance medical directives, you still make your own decisions so long as you are able to do so.
- Having advance medical directives does not prevent healthcare providers from administering comfort measures to alleviate pain and suffering.
- You should revisit and update your advance medical directives every couple of years as your preferences may change.
Families who have the chance to discuss and process these issues in advance find that events unfold much more smoothly and are less painful for everyone when the time comes to make difficult choices. Give the gift of advance medical directives to yourself and to those who love and care about you.