When is it time to say “enough?”

Seven out of ten people in the United States will ultimately die from a condition they have lived with for a long time. Some conditions require daily regiments, such as a person with diabetes needing insulin injections. Others may need weekly or monthly chemotherapy. Many manage quite well on their own, some need help with certain activities, and others need round the clock care.

It is not uncommon for a person living with a chronic condition, or those who care for them, to talk about how if x, y or z happens they wouldn’t want to live or they’d have to consider other options than care at home. When x, y or z actually does occur, many will have adjusted to changes along the way and may not even realize they have reached a particular benchmark.

Regardless of how you are affected by chronic disease, there are times when “enough is enough.” For some it’s a very clear decision and they don’t waiver from it. For others, it’s not a simple process. They may be concerned about disappointing the people in their lives, including the medical team, a shorter life expectancy, side effects, finances, quality of life and/or fear of dying.

The decision reached can also be about finally doing treatment because the pain or discomfort of symptoms is unbearable. No matter what the “enough” is, below are some ways to make the decision making process more manageable.

• Be honest with yourself and medical providers. Ask them for their assistance in making decisions. Keep in mind that the decision(s) ultimately rest with you, so listen to yourself.

• Assess as accurately as possible what the situation is.

• Use “decision making” tools
-The Ottawa Decision Guide
- Decision Aids by Health Topic
- Decision Aid Library
-Informed Medical Decisions

• Seek outside help in making the decision. This could include talking to a therapist, counselor, shared decision specialist (many hospitals now have such programs in place), a social worker, a trusted friend or colleague, or a member of the faith based community.

• If you are a caregiver, recognizing the need to take care of yourself first is important. If you can’t take care of yourself, you wont be in shape to help others.

• Caregivers are often placed in a position to make the “enough call.” A very useful resource, which can be downloaded for free or purchased, is Hard Choices for Loving People. Hard Choices covers the most common medical treatment decisions faced by those who are living with a life-threatening illness. CPR (resuscitation efforts), artificial feeding, hospitalization of an ill person and shifting to a hospice approach are all considered in depth. Besides these most common treatment decisions, there are sections on ventilators, dialysis, antibiotics and pain control. Also, at the end of the chapters on CPR, Artificial Feeding and Comfort Care/Hospice there is a section on making these treatment choices for children. This book is not just for the elderly but for anyone facing a life-threatening illness. The author Hank Dunn has served as a full time nursing home chaplain at the Fairfax Nursing Center and as a staff chaplain for the Hospice of Northern Virginia (now Capital Hospice).

• If you are a friend, it can be upsetting and confusing if someone you care about stops treatment. A good resource to consider is When Someone You Love Decides to Stop Treatment from Cancer.Net