Last week my favorite uncle passed away suddenly. He had “indigestion” on Friday night and went to the emergency room the next day to find out he had had a heart attack. Unfortunately, each day brought more bad news. He was eventually intubated and depended on a mechanical ventilator to help him breathe. He had a new diagnosis of advanced leukemia, his body could not fight off an infection, and his kidneys stopped working. By Wednesday afternoon, his four children, young adults who had never dreamed of losing a parent so soon, decided to withdraw care. He passed away peacefully early that evening.
My uncle was 68 years old and had never formally written his end of life care wishes down. But, my cousins had certainly all heard him say several times he never wanted to be in a nursing home. In this situation it was clear his prognosis was grim. Thankfully, the doctors and healthcare team communicated clearly and gave my cousins the time and space to consider all options. There was little likelihood he would improve, and if he did survive, would face a shortened life of disability, pain, and illness. Through long conversation and many tears, they decided together to let their father go.
Just as my family experienced this past week, the death of a loved one is difficult and immensely painful. It is especially hard when it is unexpected. Many times family members are called upon to make decisions they had never thought to discuss with their loved one. Not everyone agrees when there are choices to be made about which treatments to continue or stop.
Death is made even more difficult by our society’s discomfort with this part of life. Yet death is a natural, inevitable part of living. In general, medical care is oriented toward survival at all costs, without much attention toward quality of life. Having an Advanced Directive is a good way to be clear about what you want when the time comes.
Advanced Directives are formal documents that direct a person’s end of life wishes, and can be an invaluable gift to grieving loved ones. It removes the burden of decision-making from the spouse or child. Advanced Directives have different forms, but generally include your choice for who will make decisions if you are unable, and your preferences for intervention if your heart stops beating or if you need help from a machine to keep breathing. Would you want CPR? Defibrillation (kind of like on TV, applying shocks to your chest)? A tube down your throat to keep breathing artificially? And when would you want care withdrawn? What would be “meaningful recovery” for you?
There are certainly instances in healthcare when we use the interventions listed above and people come out okay in the end. But there are many other situations when we know there will not be good outcomes. A decision for full intervention, or a “Full Code,” when a person is 50 years old and healthy might change down the road when they have a diagnosis of metastatic cancer at 80 years old. Their likelihood of surviving is much lower. Some might even see a sudden cardiac event as a blessing. At that time, many people would choose “Do Not Resuscitate,” also known as a “DNR.”
With a DNR, if a person appears to be actively dying, they are offered measures to keep them comfortable, but not intensive measures such as intubation, intravenous medicines, shocks, and continuous CPR. Choosing a DNR status does not prevent a person from receiving routine, curative care for other non-life threatening illnesses, such as an infection. It only dictates what happens in the process of dying.
There are many ways to complete Advanced Directives: some do it through their lawyer, others through their doctors’ office. There are also different forms that help with specific decisions and scenarios. One very simple form is called the POLST (or Provider Order for Life-Sustaining Treatments), another much longer and detailed form is more like a living will, called Five Wishes. Nebraska has two specific forms you can download from the internet, a Living Will Declaration, and a Power of Attorney for Healthcare form. The forms are also available at Johnson County Hospital. All of these require signatures from others or a notary to make them official.
For most people, death is not easy to think about, let alone talk about. This decision is a personal preference, and complex. All of this is best to discuss now, while you are fully present and yourself. Talk with your family and let them know your wishes. Don’t put it off. You should also talk with your healthcare provider about your choices, and discuss what your hopes are for this time in your life. If you have a living will or any other healthcare directive, bring a copy to your doctor’s office to make sure your choices are known.
We cannot choose the time of our death, nor of our loved ones. We hope it will be peaceful, whenever it may be. We only really have control over how we live this one, precious life. With Advanced Directives, we now have as much control as possible over how we die.
If this article brought up more questions than answers, do not hesitate to make an appointment to discuss any of this with your trusted healthcare provider.