It is reasonable to expect that attention to comfort and quality of life are simply part of good medical care. Once a person is seriously ill and goes to a doctor’s office, hospital, or nursing home, there are some things that should be normal:
Routine assessment and competent, skillful treatment of pain and physical distress
Clear, complete, and honest communication
Respect for one’s values and preferences for treatment
Coordination of care plans among doctors involved in the person’s care and between visits
Plans to prevent crises and early treatment of urgent problems that occur at home
Enough nurses and nurse aides in hospitals and nursing homes
Support for caregiving families and for people who are grieving
In fact, many of us know—and mounds of research confirm—that these expectations are often not met.
Click here to read an article by Richard Pretorius, a former copy editor at The Washington Post.
It's a Matter of Rights
In 2002, the National Association of Attorneys General decided to address inadequacies in end-of-life care. Uniquely, the Attorneys General said these issues were matters of consumer protection. They argued that our elderly and ill were consumers whose rights and reasonable expectations were not being met.
In the course of their three-year study, the Attorneys General group defined three essential questions any patient has a right to ask:
Will my pain be managed?
Will my wishes be known and honored?
Will I receive competent care?
The Reclaiming the End of Life Initiative has built upon these questions, adding definition and a fourth focus on family caregivers to allow you to reflect on this crucial issue and how it pertains to you and your loved ones.
Will my pain be managed?
Will my doctors and nurses be adequately trained in pain assessment and management?
Will my doctors have passed an examination of minimum knowledge in pain management?
Will my doctors feel able to prescribe the amounts of medicine I need to control my pain?
Will my pharmacy carry the medications my doctors prescribe for pain?
Will my wishes be known and honored?
Will I be helped to complete an advance directive?
Will my advance directive be kept on file so that it is available when and where I need it?
Will the doctors read it?
Will doctors and others make a good faith effort to follow my wishes?
Will my family be allowed to make decisions for me if I can’t speak for myself and an advance directive can’t be found?
Will I be forced to have treatment I don’t want?
Will I be forced to give up treatments that I do want?
Can I have a DNR order (to allow me to die if my heart suddenly stops) and still have treatment to keep me alive? (i.e. be admitted to the hospital? Have antibiotics for surgery? Have surgery?)
Will I receive competent care?
Will the treatments for my illness meet accepted standards of care?
Will I know who to call if I have a problem at night or on a weekend?
Will I have the medicines at home to treat serious symptoms like pain or shortness of breath?
Will my care be coordinated between visits and among different doctors involved in my treatments?
If I have an incurable illness, will I be forced to choose between treatments for my disease and comprehensive care for my comfort and quality of life?
Will my records be available to the different caregivers who help care for me?
Will my doctors know what medicine I have been prescribed by other doctors?
Will there be enough nurses in the hospital to care for me?
If I have to live in a nursing home, will there be enough nurses and nurse aides in the facility to care for me?
If I have to live in a nursing home, will I be free from abuse and neglect?
If I don’t speak English, will there be interpreters available so that I can talk with my doctors?
Will my family be supported?
If I cannot speak for myself, will my family be supported in making difficult decisions about my care?
Will my family have help arranging for the care and services I need—whether at home, in the hospital, or in an assisted living or nursing facility?
Will my spouse have to sacrifice his/her own health in taking care of me?
Will my spouse or adult children lose their employer-based health insurance in the process of taking care of me?
Will my family become poor because of my illness and care?
Will my family lose our life savings?
Will I leave my family with debts to pay?
Please join us in finding the right answers to these crucial questions.
