Jun 24, 2013
Seeking a Good Death
by Barb Green, Parish Nurse Milton, Wis.
Over 125 billion Medicare dollars are spent in America on care near the end of life. In addition, out-of-pocket expenses average $39,000 for individuals, $51,000 for couples and up to $66,000 for people with long-term illnesses like Alzheimer’s.
If spending money ensures that people get the best care at the end of their life, the price may be worth it. That doesn’t necessarily happen. The medical system’s focus on performing interventions at any cost and the reluctance of families to talk about death, may mean that many dying people do not get the care they want. Worse, they often suffer through unnecessary, even harmful treatments. When patients have a terminal illness, at some point more disease treatment does not equal better care.
It is extremely important that your family know the end of life care you want. By not doing so you give up a decision-making power to others—the hospital, doctors, or a relative who may not know or share your preferences. Most Americans say they would prefer to die at home, yet only 24% do so. The rest spend their last days in hospitals or nursing homes. Even when the people who are dying have made their wishes known, they may be ignored or the medical team may not be aware of them.
The best time for families to share their thoughts about end of life care is before there’s a crisis. Questions to discuss include:
- What kind of life-sustaining treatment (CPR, feeding tube, ventilator) do you want, if any?
- Where do you want to be cared for?
- What is most important to you as you think about the last phase of your life?
- Do you want to take advantage of palliative care, hospice care or both?
Make the decisions binding by completing advance directives such as a living will (lays out preferences for life-sustaining treatment), and a health care proxy (appoints a person to make medical decisions for you if you cannot). Everyone should do this now. State-specific advance directive forms can be downloaded from CaringInfo.org. and can be completed without a lawyer or prepared by one as part of estate planning. Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw life support.
People often think DNR (do not resuscitate) means “give up.” It’s more about accepting and embracing the next phase of life, even if it’s death. DNR does not mean do not treat or do not care. It only means do not resuscitate by giving CPR, electric shocks or medications to restart the heart.
In addition to physical health decisions, it is important for families to talk about what they consider to be a “good death” spiritually and mentally. What specific things would you want to have happen in your last days: visits from family, reminiscing with loved ones, music that you love?
Spiritual concerns are as important as medications and comfort care. As Christians, we know that death is just the next phase in our eternal life. Yet, many people do not have this assurance and even those who do may fear the “how” of death. It is helpful for the patient to be able to discuss the fears and concerns and have these validated. It is essential that end of life care include visits from church friends and pastors, home communion, or if possible attending church.
We all want the best for a loved one and for ourselves in the final days of life. The best way to ensure this happening is to talk with each other, put your requests down on paper and be sure your physician knows about your decisions and is willing to follow your wishes. Your final days should be filled with peace and comfort rather than full of treatments that someone else thinks you need.