Why early end-of-life care planning can prevent a catastrophe
People in the United States are not good at talking about, or even thinking about, death. Yet, in the medical field, it is a daily occurrence. It is a common scene – a patient arrives after a cardiac arrest who has never spoken about his or her goals of care with their physician or family. Many of these patients have terminal illnesses with poor prognoses. Once they have gone to the Emergency Department, there is very limited time to discuss the patient’s end-of-life wishes before an emergent life saving intervention is necessary.
These situations are frustrating for both the provider and the family. With the Do Not Resuscitate order created over a half century ago, why is this still a problem and why has the system failed us time and time again?
End-of-life care is not a new issue. It has been discussed for many years and it even had its appropriate place in the Accountable Care Act before lawmakers dismissed it, deeming advanced planning discussions as a means to “ration healthcare in the United States.” The financial impact of end-of-life care is quite high (25% of Medicare is spent on the 5% of patients in their last year of life).
In many parts of the country there is a movement to change the traditional “Do Not Resuscitate” order to “Allow Natural Death.” Some studies have shown that people are more willing to support the dying process if this new term is used.
While many physicians avoid the end-of-life care discussion with their patients, one survey by Dr. Joseph Gallo suggests that 90% of physicians would not want interventions if they were terminally ill themselves. These include CPR, life support machines, dialysis, and multiple other interventions. This is not consistent with the rest of the population who errs on the side of intervention rather than palliative care or “comfort care.”
There seems to be a great disconnect between physicians and patients.
Perhaps this is due to the physician’s knowledge of what happens during these interventions, which is that most patients, especially those with chronic illnesses, either do not live, or end up in a vegetative state. In fact, to do CPR correctly with the proper force, many of the patient’s ribs are broken in the process.
I believe physicians can make a big impact by merely educating patients. With the proper information and discussions, patients can make informed decisions regarding their end-of-life care. Patients can, and should, also instigate these discussions with their physicians.
The first step is to understand your own goals of care based on multiple factors, including your age, any diseases you have, your values, and the different possible interventions that can occur at the end of life. The second step is how to express your goals of care. There are generally three types of end-of-life documents and they vary in their uses.
#1 Do Not Resuscitate (DNR)
This order is fairly straightforward. It instructs healthcare workers to “allow natural death” if the heart stops – in other words, no CPR. However, there are some nuances to DNR orders that you need to know.
First, in many states, the DNR order has to be signed by a physician and only lasts one year. So patients need to remember to renew these documents yearly.
Second, the document must be present for emergency providers to see. If the paperwork is not present and a family member is not available when a patient has a cardiac arrest, emergency providers MUST provide resuscitation until the document or a family member becomes available. This is known as implied consent – doing something to bring back life outweighs the other obvious choice, death. Many patients wear wristbands to make sure the DNR order is front and center during a medical crisis.
And third, many states have options listed on their DNR forms. Most often the options are whether to do CPR and whether to be intubated, which places a patient on life support. When a patient undergoes CPR, they must be intubated and placed on life support if their heart restarts. I have treated a number of patients who do not want intubation and placement on life support but do want CPR. This is not possible. Forms should give 2 possibilities, resuscitation, or no resuscitation in the event of a cardiac arrest. If the patient has breathing difficulty and needs to be placed on life support to help with ventilation, this is a different topic and not related to DNR.
#2 Advanced Directive
There are two parts of an advanced directive, a living will and a medical power of attorney.
Living Will
A living will is a written statement that outlines your medical goals of treatment in the event that you are not able to express consent. This can occur in a cardiac arrest, but can also occur with any event that causes a change in mental status (confusion) such as a stroke, dementia, or a number of other medical conditions. Though the intent of a living will is to abide by the wishes of the patient, I find that they are too vague and generalized to prepare family and providers to make decisions for these patients in extreme situations. Thus, the living wills are not always followed the way that the patient would have wanted, most often providing more care such as CPR and life support.
For example, a living will often say to intubate and place on life support if there is a chance for recovery. The problem is, there is always a small chance of recovery, and many times family members do not want to feel guilty for “not trying” even when the doctor gives a very low likelihood of survival or meaningful quality of life. So many more interventions occur than were perhaps the goals of the patient in the first place. Especially if the patient knew that even if they recovered, they might be on life-support for the rest of their life or end up in a vegetative state.
Finally, I have had a number of family members go against the living will during their loved one’s medical crisis. A living will is only a guideline that a medical power of attorney should follow in extreme situations. But it is ultimately up to the power of attorney to decide what is best for the patient when they cannot answer for themself. If you are a patient that does not want to be resuscitated in the event of a cardiac arrest, you should have a Do Not Resuscitate order. Do not rely on a living will to help family and providers follow your wishes.
Medical Power of Attorney (POA)
This document designates the person who will make decisions for you if you are unable to speak on your own behalf. The hope is that this power of attorney has talked with you and read your living will to understand your goals of care if a devastating medical event occurs. Unfortunately, many POAs feel guilty for “pulling the plug” so to say and elect to continue invasive treatment. This is why having very specific goals of care can make it clear what kind of treatment you want. This leads us to the last and my preferred type of end-of-life care document.
#3 Provider Orders for Life Sustaining Treatment (POLST)
A POLST is a document that defines end-of-life goals of care in the best way I have seen to date. Many states have begun to adopt this type of form, taking the burden off family and physicians when serious medical events occur. Rather than just a form, it is an approach to facilitate a discussion between patients and physicians to create specific medical orders that can be honored by healthcare workers. POLSTs have been shown to increase quality at the end-of-life and more accurately describe patient preferences.
A POLST is broken down into four categories; CPR, medical interventions (including intubation and life support), antibiotics, and artificial hydration and nutrition.
It provides an easy roadmap for physicians to follow in discussions with patients. I also like that it breaks up CPR from other interventions, which allows a different treatment plan for patients in cardiac arrest from those that have other medical crises. An example is included below from one of the first states to adopt the POLST form, Oregon.
Who should think about end-of-life care and who should fill out the documents listed above?
The truth is that we should all be thinking about end-of-life care – for our loved ones and ourselves. I know it’s a tough discussion, but understanding your goals of care and letting your decision makers know will only benefit you if something unforeseen happens.
Additionally, I believe there are certain patients that should absolutely have these discussions with their loved ones and physicians without delay, and have the documents above completed, preferably a POLST, or a DNR order if no resuscitation is desired. These patients include:
- Any terminal illness
- Rapid decline over 3-6 months
- Unable to take care of oneself
- Any cancer
- Dementia
- Neurological diseases such as ALS, Parkinson’s, and others
- History of stroke
- History of heart disease
- History of kidney disease
- Any other concerning past medical history
- Patients 65 years and older
Palliative Care
Palliative care is a wonderful option for a number of people. It can benefit patients by decreasing suffering and improving quality at the end-of-life. Palliative care is not a “do nothing” approach. It brings a wide variety of treatments and tactics to comfort the body and mind near the end-of-life. If you or your loved one has a prognosis of less than 12 months, multiple admissions or visits to the ER, declining functionality, or are requiring more complex care needs, palliative care can offer a number of services that are highly worthwhile.
Conclusion
We must be prepared, as physicians and patients, for the final phase of life. Advanced Directives such as living wills and the power of attorney are not enough and typically leave family members perplexed as to whether to continue care or let their loved ones die. If you continue care, are you prolonging pain and suffering? If you let a family member die, are you giving up too quickly? These are questions that should not have to be posed once the patient has arrived in the Emergency Department. It is time that we mandate end-of-life care discussions and create a system that promotes palliative care. POLSTs are one solution that help, but a change in culture that supports allowing natural death is even more important.
Patients need to have a chance to say “I love you” and “It’s ok to let me go” prior to their last days. Family members need to hear these phrases and have a chance to come to terms with their loved one’s impending death. And physicians need to facilitate these discussions early on and guide our patients to achieve what’s most important to them at the end of their life, namely avoiding suffering, being with family, staying mentally cognizant and not being a burden to others.
Please join me in promoting early end-of-life care discussions in our country. Patients certainly deserve to be informed about their options before it’s too late.