End-of-life decision making is an emotionally fraught time for those that are dying and their families. At some point in our lives, everyone faces the death of a loved one. The trauma of these deaths can last for many years after their passing. Because of the advances in modern medicine, many more lives are saved and many more people are living longer and healthier lives. The downside of this improved healthcare is that many people now linger in ways that were unimaginable a generation or two ago.
This has created a new set of burdens for the dying and their families. Individuals want their end-of-life wishes followed and die in a manner consistent with their beliefs and values. Families want to know that they made the right decisions for their loved ones.
How People die in Oregon
The vast majority of Oregonians die of natural causes. According to the Oregon Health Authority, 34,160 Oregonians died in 2014. Of those, 31,395 (91.9%) died of natural causes. Seventy-five percent of the deaths (25,702) were for Oregonians aged 65 or older.
For 2012, the CDC broke down the Causes of Death further:
Nationally the numbers are the similar. Most deaths occur in those 65 and older any many die in hospital settings.
How people want to die
The majority of Americans want to die at home. Survey after survey has found that. Unfortunately, that is not how most Americans die: 63% of Americans die in hospitals and 17% die in long term care facilities. In 2010, the average hospital stay that resulted in death was 7.9 days. (CDC) Oregonians average of 5.2 days in the hospital before death in 2013.
What do Americans fear most about dying?
People fear that their pain, symptoms, anxiety, emotional suffering, and family concerns will be ignored. Many critically ill people who die in hospitals still receive unwanted distressing treatments and have prolonged pain. Many fear that their wishes (advance directives) will be disregarded and that they will face death alone and in misery. Physicians may use confusing or vague medical terms and talk briefly about treatment options when the patients are too sick to participate. Most people want to discuss advance directives when they are healthy and often want their families involved. (American Psychological Association End of Life Factsheet)
If Americans want to die at home, then why do so many end up dying in the ICU?
Effect of End of life decision making on families
The stress of end of life takes a tremendous toll on families and healthcare surrogates (someone who makes medical decisions for you.) For those who were healthcare surrogates that made medical decisions when love ones were in the ICU, one third had symptoms of Posttraumatic Stress Disorder (PTSD.) Eighty-two percent of those who had to make end of life decisions had symptoms of PTSD. (Surviving Surrogate Decision-Making: What Helps and Hampers the Experience of Making Medical Decisions for Others)
Now compare this to the lifetime rate of PTSD symptoms in the American Military. The lifetime rate of PTSD for Vietnam Veterans is 31% and the rate for Afghanistan/Iraq veterans is 14%. (Veterans and PTSD)
Surviving spouses and other caregivers also have decreased life expectancy after the death when hospice and other palliative measures are not used. (PUBMED.) The burden of this decision-making and the negatives outcomes for family members can be lessened when family’s discuss end-of-life decisions before they are need and by creating Advanced directives.
How to Resolve
What is quality of life while dying and what is a good death? Most people want to die quickly, painlessly and in their sleep but that is not always the case. People often assume that loved-ones know their wishes and never talk to them regarding it. Don’t assume that your individual values and wishes are known by your loved ones.
Advanced Medical Directives
The Oregon Health Care Decisions Act (ORS Chapter 127) allows Oregonians to create Advance Directives for Health Care, Powers of Attorney, Declarations for Mental Health Treatment and other documents.
Advanced directives allow a person to decide their treatment wishes while they are still able. They also allow you to appoint a healthcare representative to direct your health care when you are unable to do so. You can also place limits on the decisions that your Healthcare Representative can make for you. For example, you may have certain religious or ethical beliefs that you want taken into account when life-sustaining decisions are being made and that your Healthcare Representative should honor your wishes.
Advanced directives also allow you to make decisions about specific medical conditions and treatments. Below is an excerpt from an Advanced Directive:
In this example, you have an Advanced Progressive illness and are very unlikely to substantially improve. Importantly, you are unable to communicate and someone else will have to make medical decisions for you. With the Advance Directive you can choose the care you desire in this situation by initialing the form.
The State of Oregon has information regarding Advance Directives and an Advance Directive form available online.
If you have any questions regarding end-of-life decisions, please discuss with your family, your physician and, if necessary, with your attorney.