We don’t know for certain what will happen after we die, but we can take action to ensure that the time right before we die is as comfortable and meaningful as possible.
When I saw Mrs. Carolina Brown for the first time, I immediately noticed two things. One was that she was curled up in a fetal position under the white hospital sheets, “contracted” in medical terms, the way many patients in the last phase of Alzheimer’s disease are at the end as their bodies collapse into themselves. The second thing I noticed, as I pulled back the sheets, was that her skin was moist, clear,and free of ulcerations that typically occur when patients are confined to bed for long periods of time.
Her skin told me that she was loved.
Someone was taking great care to turn her in the bed every few hours and to meticulously bathe and moisten that skin. Her daughter Sheryl’s voice was strong and sure over the phone. She knew that her mother’s disease was terminal. She just wanted her to be at home where she could continue to care for her. But when Mrs. Brown developed pneumonia, her breathing became labored and she was crying out, Sheryl called 911 and brought her into the hospital.
Throughout the life cycle, people from racial and ethnic minority groups in America often get inferior care compared to white Americans. Many minorities live and work in environments that are less healthy, receive less preventive care and less chronic disease management, and experience inferior access to state-of-the-art care for major medical problems. Care toward the end of their life is no exception, but it can be. This leads me to introduce hospice.
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The quality that patients in hospice receive is unmatched anywhere else in the health care system. Hospice agencies provide care along the four domains of well-being: psychological, physical, social and spiritual. Hospice provides services in patients’ homes so they can stay in the places where they feel most comfortable; away from the bright lights, impersonality, regimentation and sterility of hospitals.
Hospice agencies must provide a nurse who visits the home and creates an initial care plan with the patient and family. Nurses then visit every one to two weeks or more often if necessary. Hospice agencies provide durable medical equipment such as hospital beds and other supplies, as well as medication delivered to the home. They also provide a physician who oversees care, a chaplain and a social worker. Hospice agencies provide a limited number of hours of home attendant services to tend to basic needs. If a crisis occurs or if death is near, patients and families have alternatives to rushing to the emergency room. Short-term 24-hour nursing care can be provided in the home or patients can be cared for in a home-like inpatient hospice facility.
Hospice organizations are known for providing state-of-the-art treatment of pain and other symptoms at the end of life, and receive unrivaled scores for quality of life near-death and family satisfaction for patients of all racial and ethnic groups. In short, there is no way to provide better care to dying patients.
However, most Americans will never see that type of care, especially people from racial and ethnic minority groups.
Hospice is available for people who are terminally ill and, at least for now, it is restricted to those who are no longer receiving treatment for their underlying diseases, either because they have decided against it or because no other reasonable treatments are available.
Many people don’t know this because doctors are trained to treat disease and look for new treatment options much better than they are trained to educate patients and families about hospice care. Studies show that they are even worse at discussing these issues with patients from racial and ethnic minority groups. It takes a lot of trust to believe your doctor when he or she says that curative treatments are no longer on the table, especially in a country with historical abuses of minority groups by medical professionals, such as the Tuskegee study during which doctors withheld treatment for syphilis from African-American men.
Many families experience similar hesitations: “Is that what she would say if she was talking about her mother, sister, husband?” You may wonder. “ Is there something else that would be available at another hospital? For patients with better insurance than I have?”
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These families might take comfort in knowing that most doctors prefer hospice over hospital-based treatment for their own and their family’s end-of-life care, but they have trouble advising this to their patients. It feels like defeat. Doctors generally recommend hospice very late, when patients are close to death.
Hospice is a way to increase the quality of time left. Hospice services will not hasten death. Doctors refer patients based on their best guess as to how long a patient may survive. Some patients live longer than expected. In this case, most patients can continue to receive hospice services as long as they continue to meet the same criteria.
When I explained all of this to Sheryl, I could hear the relief in her voice. She knew how best to care for her mother. She just needed support and timely medical assistance in her home. The next day her mother was home again, to continue her treatment where she was most comfortable.
So what should you do if your doctor suggests hospice care for you or a loved one?
First, allow yourself to grieve. This news is likely to come as a shock. Unfortunately, patients and their loved ones are often the last to know how serious their illness has become, and hope is a powerful filter of information that comes from both our doctors and our bodies.
Second, consider taking your doctor’s advice to explore your options. If your doctor has mentioned hospice, it is most likely because the available treatments for the illness are likely to make you sicker rather than improve how you feel or lengthen your life. Your doctor is recommending hospice because it is the best way doctors know how to care for you and your loved ones given the limits of our ability to cure. Hospice is not abandonment. Hospice is the opposite; hospice workers are committed to walking with you for that final journey.
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Ask to speak to representatives from hospice agencies in your area. While basic services are standardized, find an agency that best fits your needs. Sometimes, if care at home is unmanageable for you or your family, hospice can be provided in a nursing home alongside standard care and, rarely, residential hospice services may be available depending on your location.
What if you suspect your illness is terminal, but no one has broached the issue of hospice with you? Don’t be afraid to ask about hospice services. Sometimes necessary referrals are not made because doctors, families and patients are each waiting for the other one to start the conversation. Hospice care is quality care. You have the right to receive this care if your doctor determines that you meet specific criteria.
The health care system needs to improve to reduce differences in quality of care provided to patients across racial and ethnic groups. In the meantime, don’t allow yourself to accept inferior end-of-life care. Demand the best care possible.
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Inequality and End-of-Life Care: How to Demand the Best originally appeared on usnews.com
