FOR MOST OF US, THE DISCUSSION OF ADVANCED ILLNESS ranges from being mildly uncomfortable to frightening. It’s no wonder that most of us put off such a discussion “for another day.”
Advance Care Planning and the Advance Directives
This post is intended to inform, to reassure and demystify the most useful tools of the trade. If I can help you see the inherent benefits of discussion and planning, this post will have served its purpose.
An essential conversation begins in our own hearts and minds when we realize and accept that life has a beginning, a middle and an end. This realization and subsequent willingness to talk with our loved ones, and to our doctors about our concerns and preferences, falls under the heading of Advanced Care Planning (ACP).
The Conversations are the important part. Eventually, a signed Advance Directive (AD), or “Living Will,” may help guide planning and decision-making. Yet it all starts with the courage to consider and then discuss what’s most important to us. A good rule of thumb: to devote 80% of our time and attention to discussion and reflection, and 20% to documentation. Many of us have inadvertently steered toward just the opposite.
A Right and A Responsibility
How do we start the process and accomplish this? First, by realizing our right and responsibility to prepare for this inevitable time of life. It’s not easy to talk about the end of life, yet it’s terribly unkind to leave a spouse, child or loved one in a position of uncertainty about something so important.
Too many of us die in a way we would never want, simply because we didn’t communicate clearly. The survivor’s guilt that can result from not knowing a loved one’s preferences, and then questioning whether we made the right decisions is a cruel inheritance.
There’s broad agreement that these conversations are a personal “response-ability.” Yet it’s quite normal to procrastinate, often beyond a point of no return. The hard truth is that eight out of ten of us will succumb to a serious illness. While we’re still capable, we each have the ability to consider, discuss and choose our response.
In the near term, by assuring that our hopes and fears are shared and understood, most people experience more peace of mind. In the long term, the proven outcome is less fear and undue suffering, for both patient and loved ones.
Simple, straight forward paperwork is available free of charge from your doctor, local hospital, or from your state health department. It’s also available here at Five Wishes.
It’s not necessary to hire an attorney. In fact, most attorneys create documents that are too long and unnecessarily complicated, let alone expensive. Most importantly, after completing any paperwork, give signed copies to your Healthcare Agent, your primary care doctor, and your local hospital so it can be scanned into your Electronic Medical Record.
What Do We Need to Talk About?
The Patient Self Determination Act encourages us to discuss, choose, and document the types and extent of medical care we would want, or not want, if we become unable to speak for ourselves.
In essence, what we need to talk about, either ahead of time or more likely, in real time, is how aggressive we want the medical team to be, particularly if our condition is terminal and irreversible.
The ethical foundation of providing all medical care is through Informed Consent. It’s important to remember that every treatment or procedure, except for initial life-saving efforts, is conducted with our consent or with the consent of our Healthcare Agent. What matters most here is to be Informed. To be clear on what we’re consenting to is of the utmost importance.
The weak link is that most patients don’t fully understand (or care to?) the medical treatments they’re agreeing to. Most of us trust our doctors to know what they’re doing and to fix the problem. This works well until the doctor encounters a problem or condition that can’t be fixed.
It’s all too common, and severely compromising, for a patient or their Agent to be handed consent forms for aggressive treatment in the throes of a life-threatening emergency. While often unavoidable, this is the most difficult time to make such a choice. Clarifying and documenting our goals of care ahead of time can help avoid and navigate such an emergency.
Are Some Conditions Worse Than Death?
What gives my life meaning? And how do I define “Quality of Life”? These personal questions can help address what we would want in certain situations if medical treatment could not reverse or improve our condition.
For example, what if I were in severe pain most of the time? What if I needed to be on a feeding tube or breathing machine to keep me alive? What if I had to live in a nursing home? Or I no longer recognized my family or friends?
These are the kind of circumstances that people struggle to come to terms with. Ideally, discuss them with your Healthcare Agent. Your responses can also be added to your Advance Directive.
“Allow Natural Death” and “Do Not Resuscitate”
Do Not Resuscitate (DNR) means that if we stop breathing or our heart stops, which back in the day was called death, no heroic measures will be attempted to bring us back. In many hospitals, in an end-of-life setting, Do Not Resuscitate (DNR) is being renamed Allow Natural Death (AND).
The reason being, that DNR implies resuscitation is even possible, when most often it isn’t. Also, the term DNR carries a negative connotation that something essential is being withheld that would otherwise lead to a positive outcome. It’s misleading. The success rate of Cardiopulmonary Resuscitation (CPR) when performed on people nearing end-of-life is less than 3%.
“Allow Natural Death” is gaining acceptance because it speaks more honestly to what is taking place in a critically ill body when the heart or breathing stops. In a recent Stanford University survey of 1400 Medical Doctors, 88% had chosen “DNR” / “AND” for themselves.(cite) Why? Most likely because medical doctors are highly aware of the limited benefit and extensive burden of resuscitation efforts.
“Comfort Measures Only”
Often, Advance Care Planning clarifies under what circumstances we would want our doctors to do “everything possible”, and for how long. If our quality of life diminishes beyond an acceptable point, then our Advance Directive can also clarify when enough is enough.
If the medical team concedes that nothing more can be done to treat a terminal illness, and the patient and family agree to focus on symptom management, then Comfort Measures Only (CMO) becomes a saving grace. It says, in essence, we now accept that death is inevitable, though not necessarily imminent.
Comfort Measures Only is an official physician’s order to stop all curative treatment and to allow death its due. It is an express wish to relieve or minimize all forms of further suffering. CMO can be highlighted in one’s Advance Directive, and lies at the heart of Hospice Care, which will be discussed here in detail in the weeks to come.
Next Week: Palliative Care
Palliative Care is a medical specialty, appropriate at any point during serious illness, but still a mystery to many people. Next week’s Post will explore Palliative Care in detail, in hopes of making it clearer and more accessible.
***
Feel free to leave a comment below to let me know what’s on your mind and what you’d like to hear more about. If you’d like to forward this Post to family or friends, please click on one of the blue links below.
‘Until next week, Safe Journeys –
DSW