Saturday, April 16 was the fourth annual National Healthcare Decisions Day (NHDD). The NHDD coalition aims to inspire, educate, and empower the public and providers about the importance of advance care planning. Americans of every age should converse with their doctors and families. Do this with love for those who may have to act on your behalf. Talk with them, appoint a representative, and document your wishes in case you become unable to make or communicate healthcare decisions.
But you're not done yet. NHDD intends "to encourage patients to express their wishes regarding health care, and providers and facilities to respect those wishes, whatever they may be." Don't just create an advance directive. Make these documents more than just "wishes." Advance directives could remain a hollow exercise unless they actually govern care.
Patients and their surrogates feel violated when a health care institution ignores written directives. Dying patients should not have to bear insertion of unwanted tubes to measure pressures, augment breathing, siphon throats, empty urine, drain fluids or administer nutrition.
A few years ago, Compassion & Choices stepped in after providers at a California hospital administered full cardio-pulmonary resuscitation to 82-year old Margaret Furlong in violation of her advance directive. Margaret endured 10 days of intensive care despite squeezing her son's hand to ask that her hands be untied and machines discontinued. It infuriates me to consider that Medicare paid the hospital for the cruelty it inflicted on Margaret. This torture and abuse of patients occurs too frequently in America.
This year, you can help Compassion & Choices put patients at the center of care. We aim to correct the system's perverse incentives to ignore patient instructions and deliver unwanted treatments. Federal agencies that pay for medical services could put teeth into advance directives, and Compassion & Choices will ask them to help.
April 16 was a day to communicate your choices and make them stick. Find advance directives and easy-to-use tools for advance planning at the Compassion & Choices Good to Go resource page: http://www.compassionandchoices.org/g2g.
Demand respect by joining our action network: compassionandchoices.org/alerts. There you can participate in effective tactics to persuade policy makers that your advance wishes matter.
Talk the talk. Then walk the walk.