As more people turn to hospice care in their final days, a study shows that rural areas are not as advanced in end-of-life care as metropolitan areas.
But whether someone lives in a city or in the country, knowing what constitutes highly professional hospice care and how to navigate the process is crucial for families of terminally ill patients, says author Debbie Johnston (www.debbiejohnston.com). from The Hospice Handbook: Sister Debbie’s compassionate guide to navigating end-of-life care.
“Educated patients and families have better experiences with hospice care,” says Johnston, a longtime healthcare entrepreneur and founder of hospice businesses. “Love and caring is what hospice care is about.
“Every stage of life counts. We need to devote more energy to supporting the needs of our families, friends and neighbors as they enter the final stages of their lives.”
Hospice care focuses on symptom and pain management and comfort care versus disease-altering therapies. It can take place in a healthcare facility or in a patient’s home.
“A multidisciplinary team of professionals will review all aspects of the patient’s life and create a plan based on that patient’s unique diagnosis,” says Johnston. “They do this to ensure the patient is receiving the physical, psychological and spiritual care they need to feel as happy and comfortable as possible.”
Johnston offers these tips for choosing and navigating hospice care:
- Who and what to ask: Johnston suggests calling the hotline (800-658-8898) at the National Hospice And Palliative Care Organization. “Also, reach out to healthcare professionals you trust or families who have experience in hospice care,” she says. “In terms of choosing a hospice agency, the Centers for Medicare & Medicaid Services (CMS) is one option; It has a web-based “hospice comparison tool” that allows people to compare reviews of Medicare-certified hospices.”
Johnston says these are some key questions to ask:
- Is the hospice Medicare certified?
- Has the hospice been assessed by a state or federal supervisory authority in the last five years?
- Is the organization an NHPCO member and does it meet all aspects of the NHPCO standards for hospice programs?
- Are clinical staff—physicians, nurses, nurses, nursing assistants, social workers, and chaplains—certified or licensed in hospice and palliative care?
- In the event of a crisis, does the staff come to the home at any time of the day or night and at the weekend? Who is available for home visits?
- Consider the many roles of a strong hospice team. “The members of your hospice team should be reliable, compassionate, and smart because they’re well trained,” says Johnston. The doctor can be provided by the hospice or the patient’s own doctor, she says, and the rest of the team consists of registered nurses, social workers, a chaplain, counselors, and perhaps a speech therapist, occupational therapist, and/or physical therapist. “The goal of the team is to keep the patient as pain-free as possible, control the symptoms and support the patient as much as possible,” says Johnston. “They will interact with the patient’s family and coach them on nursing skills. They are intimately familiar with end-of-life scenarios and will hold the hand of their terminally ill loved one as they walk this journey with them and family.”
- Get a medical power of attorney. A Power of Attorney allows you to appoint someone to make health decisions for you when you are no longer able to make those decisions yourself. “This is one of the most comforting things you can do for yourself and your loved ones,” says Johnston. “Most people nominate a family member or close family friend. Whoever holds your Power of Attorney should have access to your living will, or at least your wishes regarding the type of healthcare you would like to receive if you are no longer able to speak for yourself.”
“The hospice relieves the patient and family of so many burdens,” says Johnston. “The increase in quality of life through hospice care often even extends the life expectancy of patients. Also, families who enroll earlier adapt better to the bereavement period than 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 healthcare professional, Johnston founded Care Advantage Inc., which has grown into a leader in the developed personal and companion home health care and was sold to Bell Health in 2017. With the founding of her nonprofit organization, Connecting Hearts, Johnston was named Virginia’s Adoption Champion by the then governor. Terry McAuliffe. Her latest venture, Serenity First Hospice, is inspired by her personal journey with her father, Pappy. She has appeared on ABC television’s Secret Millionaire and has received numerous local, state and regional awards for her efforts as a humanitarian, philanthropist, entrepreneur and leader.