While more people are turning to hospice care for comfort in their final days, a study shows that rural areas are not as advanced in end-of-life care as metropolitan areas.
But regardless of whether someone lives in a city or in the country, it’s crucial for families of terminally ill patients to know what constitutes highly professional hospice care and how to navigate the process, says Debbie Johnston (www.debbiejohnston.com), author of The Hospice Handbook: Nurse Debbie’s Compassionate Guide To Navigating End-Of-Life Care.
“Educated patients and families have better hospice care experiences,” says Johnston, a long-time health care entrepreneur and founder of hospice care companies. “Love and care are what hospice care is about.
“Every stage of life matters. We need to put more energy toward supporting the needs of our families, friends, and neighbors entering the last stage of their lives.”
Hospice care focuses on symptom and pain management and comfort care over disease-altering therapies. It can take place in a healthcare facility or a patient’s home.
“An interdisciplinary team of professionals will review all aspects of the patient’s life and make a plan based on that patient’s unique diagnosis,” Johnston says. “They do this to ensure that the patient is receiving the physical, psychological, and spiritual care they need to be as happy and comfortable as possible.”
Johnston offers these tips on how to choose and navigate hospice care:
Who and what to ask: Johnston suggests calling the help line (800-658-8898) at the National Hospice And Palliative Care Organization. “Also check in with any healthcare professionals you trust or families who have experienced hospice care,” she says. “In terms of choosing a hospice care agency, one avenue is the Centers for Medicare & Medicaid Services (CMS); it has a web-based “hospice compare” tool that allows people to compare ratings of Medicare-certified hospices.”
Johnston says these are some key questions to ask:
Is the hospice Medicare-certified?
Has the hospice been surveyed by a state or federal oversight agency in the last five years?
Is the organization an NHPCO member, and does it comply with all aspects of NHPCO’s standards for hospice programs?
Are clinical staff – physicians, advanced practice nurses, nurses, nursing assistants, social workers, and chaplains – certified or credentialed in hospice and palliative care?
Will staff come to the home if there is a crisis at any time of the day or night and on weekends? Who is available to make the home visits?
Consider the many roles of a strong hospice team. “Your hospice team members should be reliable, compassionate and smart because they are well-trained,” Johnston says. The doctor can be one provided by hospice or the patient’s own doctor, she says, and the rest of the team includes registered nurses, social workers, a chaplain, counselors, and perhaps a speech, occupational and/or physical therapist. “The team’s goal is to keep the patient pain-free as possible, to control symptoms, and to support the patient anyway they can,” Johnston says. “They’ll interact with and coach the patient’s family about caregiving skills. They’re extremely familiar with end-of-life scenarios, and they will hold your terminally ill loved one’s hand as they walk that road with them and the family.”
Get a medical power of attorney. With a medical power of attorney, you can appoint someone to make healthcare decisions for you if you become incapable of making those decisions yourself. “This is one of the most comforting things you can do for yourself and your loved ones,” Johnston says. “Most people appoint a family member or close family friend. Whoever holds your medical power of attorney should have access to your living will or, at the very least, know your wishes about the kind of healthcare you want to receive if you become unable to speak for yourself.”
“Hospice relieves so many burdens on the patient and the family,” Johnston says. “Often the increase in quality of life because of hospice care actually lengthens the
patient’s life expectancy. Plus, families who enroll earlier adjust better to the bereavement period than do families who get hospice at the last minute.”
About Debbie Johnston
Debbie Johnston (www.debbiejohnston.com) is the author of The Hospice Handbook: Nurse Debbie’s Compassionate Guide To Navigating End-Of-Life Care. A successful entrepreneur and health-care expert, Johnston founded Care Advantage Inc., which became a leading company for personal and companion home health care and was sold to Bell Health in 2017. With the foundation of her nonprofit organization, Connecting Hearts, Johnston was appointed Virginia’s Adoption Champion by then-Gov. Terry McAuliffe. Her newest business, Serenity First Hospice, is inspired by her personal journey with her father, Pappy. She was featured on ABC television’s Secret Millionaire and has received numerous local, state and regional awards for her efforts as a humanitarian, philanthropist, entrepreneur and business leader.