Leaders in the care of patients who face serious and life-limiting illness have designated November as National Hospice and Palliative Care Month, prompting more stories about both options. The Milwaukee Journal Sentinel gives a very good overview of palliative care and hospice in this Q&A with Dr. Diane Meier. The theme of this year’s observance is “We Listen. We Care.”
Listening is the number-one objective of our End-of-Life Consultation team (EOLC). Do you or someone you know face a serious illness? Do you have questions about palliative care or hospice? A Compassion & Choices representative will gladly answer any questions you or your loved ones have about what these options mean and how each can improve quality of life. Anyone can access an EOLC counselor at no cost by calling 800-247-7421.
Caring about the patient, especially at the end of life, is a key objective of our educational and advocacy efforts. Our goal is to change the focus of medical providers to the patient rather than the patient’s illness. This is the core of our principles for patient-centered care. As individuals face the end of life and try to navigate the healthcare system, their own values and choices should be paramount. Our seven principles – focus, self-determination, autonomy, personal beliefs, informed consent, balance and notice – are designed to guide healthcare providers and policy-makers to place patients’ values at the center of end-of-life care.
End-of-life care should focus on the patient’s life and current experience. Too often death is seen as a failure of treatment, not a natural event. During this time, having choices can relieve hopelessness. The Seven Principles guide providers in putting the patient first:
1. Focus. End-of-life care should focus on the patient’s life and current experience.
2. Self-determination. Individuals vary in their tolerance for pain and suffering.
3. Autonomy. Decisions about end-of-life care begin and end with the autonomous patient.
4. Personal Beliefs. Patients should feel empowered to make decisions based on their own deeply held values and beliefs, without fear of moral condemnation or political interference.
5. Informed Consent. Patients must have comprehensive, candid information in order to make valid decisions and give informed consent.
6. Balance. Patients should feel empowered to make decisions based on their own assessment of the balance between quantity and quality of life.
7. Notice. Patients must have early, forthright and complete notice of healthcare providers’ institutional or personal policies or beliefs that could impact their treatment wishes at the end of life.
Some physicians are reluctant to make a hospice referral if they believe there is a chance a patient’s disease can be still be treated. This typically occurs when oncologists are very invested in the “battle” against cancer. Remember your wishes and values are what matter most when determining whether to forgo further treatment that targets the disease.
The fifth principle, informed consent, requires that physicians give patients full and honest information about the pros and cons of all treatment options, both those directed at the patient’s illness and others for pain and symptom management. Compassion & Choices works for public policies to push the reality of medical practice closer to that principle, as I will discuss in a later post.
If you have an incurable and progressive disease and have not discussed hospice with your physician, we suggest you do so. While you may not need such assistance now, understanding how to enroll in hospice can be helpful and alerts your physician to your end-of-life wishes.
If your doctor is reluctant to refer you to hospice in a timely manner, many hospices provide a free in-home evaluation to determine whether your medical condition merits hospice care. If the hospice providers agree that you are eligible for their services, the hospice physician will contact your primary-care physician to obtain your medical history and transfer your care to the hospice professionals. You or a person you designate can contact any hospice in your community to arrange for this assessment.
Our EOLC team can facilitate that process, help with advance-care planning or advocate for effective pain management. “We Listen. We Care.” At Compassion & Choices we rededicate ourselves this November to those principles, which form the very core of our mission.