Tips for finding the right palliative care for a loved one
As more and more people turn to palliative 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 whether someone lives in the city or the country, it’s essential that families of terminally ill patients know what constitutes highly professional palliative 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 palliative care experiences,” says Johnston, a longtime healthcare entrepreneur and founder of palliative care companies. “Love and care is what palliative care is.
“Every stage of life matters. We need to devote more energy to meeting the needs of our families, friends and neighbors as they enter the final stage of their lives.
Palliative care focuses on symptom and pain management and comfort care rather than disease-modifying therapies. It can take place in a health facility or in a patient’s home.
“An interdisciplinary team of professionals will review all aspects of the patient’s life and develop a plan based on that patient’s unique diagnosis,” says Johnston. “They do this to ensure the patient receives the physical, psychological and spiritual care they need to be as happy and comfortable as possible.”
Johnston offers these tips on choosing and navigating palliative care:
- Who and what to ask: Johnston suggests calling the National Organization for Hospice and Palliative Care Helpline (800-658-8898). “Also check with healthcare professionals you trust or families who have had palliative care experience,” she says. “In terms of choosing a hospice agency, one avenue is the Centers for Medicare & Medicaid Services (CMS); it has a web-based “hospice comparison” tool that allows people to compare Medicare-certified hospice ratings.
Johnston says these are some key questions to ask:
- Is the hospice certified by Medicare?
- Has the hospice been inspected by a state or federal oversight agency within the past five years?
- Is the organization a member of the NHPCO and does it meet all aspects of the NHPCO standards for palliative care programs?
- Are clinical staff – physicians, advanced practice nurses, nurses, practical nurses, social workers and chaplains – certified or accredited in hospice and palliative care?
- Will the staff come to the house if there is a crisis at any time of the day or night and on weekends? Who is available to make home visits?
- Consider the many roles of a strong palliative care team. “Your palliative care team members need to be reliable, compassionate, and intelligent because they are well-trained,” says Johnston. The doctor can be provided by the hospice or the patient’s doctor, she says, and the rest of the team includes registered nurses, social workers, a chaplain, counselors and possibly a speech therapist, occupational therapist and / or a physiotherapist. “The team’s goal is to keep the patient pain free as much as possible, control symptoms and support the patient in any way possible,” Johnston said. “They will interact with the patient’s family and coach them on caregiving skills. They are very familiar with end-of-life scenarios and they will hold your terminally ill loved one’s hand as they walk this road with them and their family.
- Get a medical power of attorney. With a medical power of attorney, you can appoint someone to make health care decisions for you if you become unable to make those decisions yourself. “It’s 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. The person who holds your medical power of attorney should have access to your living will or, at the very least, know your wishes regarding the type of health care you want to receive if you become unable to speak for yourself.
“Hospice relieves so many burdens for the patient and the family,” says Johnston. “Often, the improvement in quality of life through palliative care actually extends the patient’s life expectancy. In addition, families who register earlier adapt better to the period of bereavement than families who obtain hospice at the last minute.
About Debbie Johnson
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 expert, Johnston founded Care Advantage Inc., which became a leading personal and complementary home healthcare company and was sold to Bell Health in 2017. With the founding of his non-profit organization, Connecting Hearts, Johnston was named Virginia Adoption Champion by the then-Governor. Terry McAuliffe. Her new business, Serenity First Hospice, is inspired by her personal journey with her father, Pappy. She was featured on ABC television secret millionaire and has received numerous local, state and regional awards for her efforts as a humanitarian, philanthropist, entrepreneur and business leader.