It’s our belief — and our experience for the past 30 years — that the path to change starts with the individual, which is why patient-directed care stands at the core of all we do.
End-of-life care should focus on the individual’s comfort.
Too often, death is seen as a failure of treatment, not a natural event. Physicians sometimes withdraw from patients who are in the terminal stage of illness or encourage them to continue invasive therapies that can make their final days miserable. This deprives people of the opportunity to enter what is sometimes called “the final stage of growth.”
You are in charge of your own care. Set your priorities in advance.
Individual tolerance for pain and suffering varies dramatically.
Only you can determine whether you are suffering too much. You should receive appropriate, state-of-the-art comfort care in accordance with your needs.
Providers should generously prescribe medication for pain and breathlessness, and give patients control over the dose and frequency of administration.
Symptoms such as hiccoughs, nausea, diarrhea, itching and fatigue can be oppressive and should be taken seriously. Say something if you feel you are being ignored, or empower your healthcare representative to speak on your behalf.
Decisions about end-of-life care begin and end with the individual.
The answer to the question, “Who should decide?” is “YOU.”
Even very ill people usually retain the capacity to make decisions. Loved ones and providers should take care not to usurp that authority when communication becomes difficult.
If you are no longer capable of making decisions, your known wishes (as detailed in your advance directive) still dictate the level of care you receive. Ensure clarity by completing a dementia provision.
4. PERSONAL VALUES
You have the right to make decisions based on your own deeply held values and beliefs, without fear of moral condemnation or political interference.
Dying patients should not be subject to subtle or overt suggestions that their values are wrong or immoral. A provider’s beliefs should never supersede the patient’s. Providers who withhold vital information about treatment options must be held accountable. Compassion & Choices advocates for laws and policies that protect your rights.
5. INFORMED CONSENT
You have the right to comprehensive, candid information to enable you to make valid decisions and give informed consent.
Compassion & Choices encourages you to assess your situation using the following “BRAIN” exercise. Before consenting to procedures and treatment, assess the: Benefits, Risks, Alternatives, Insight into what these mean to you, and consequences of doing Nothing.
Ask the doctor these crucial questions as you consider disease-specific treatment: What is the chance it will prolong my life? By how much?
What are the side effects?
How will it affect my quality of life?
What are the alternatives?
Providers should never withhold information about legal alternatives. Doing so deprives you of the information you need to give informed consent.
You must be empowered to make decisions based on your own assessment of the balance between quantity and quality of life.
You may reject treatment because of unacceptable side effects. Saying “no” to burdensome treatment may improve your quality of life and give you more opportunities to experience joy in the time you have left.
You as the patient have the right to early, forthright and complete notice of institutional or personal policies or beliefs that could impact your end-of-life wishes.
People who are dying often discover too late that the beliefs and values of their healthcare provider limit their personal end-of-life options.
Health-plan marketing materials and enrollment documents should prominently spell out any such limitations in a clear, forthright manner. Hospitals, clinics, pharmacies, and other healthcare institutions should publicly display information about restrictive policies of a religious or moral nature. Again, you and your representative should verify that your providers will adhere to your wishes.