My 89-year-old mother lives in Los Angeles has struggled with strokes, arthritis, chronic illnesses, falls and pneumonia, resulting in multiple hospitalizations. She has help at home, but her overall health and pain management are very daunting and fragmented. One of my friends suggested that I ask for hospice care but my mom is not “terminal” and she doesn’t have cancer. She treasures life!
How can I make things better for her? Is there something like hospice care, but for someone who is not yet facing end of life? — L.M., Walnut Creek
We get this question fairly often in our practice: How can family members best ensure quality of life for someone not ready for hospice care but needing intensive, coordinated support? Most of us are aware of what hospice, or end-of-life care, can provide, and it’s been a Medicare benefit for about 30 years. But while we may have heard the term “palliative care,” many of us aren’t quite sure what that is and how it differs from end-of-life care.
The goal of hospice care is to dignify the dying experience and to provide a comprehensive approach for a person who has a prognosis of six months or less to live. During this period, people forgo curative treatment. While palliative care grew out of hospice care and is closely related, the main difference is that patients still pursue curative treatments while undergoing palliative care.
Palliative care has been practiced informally for many years and recently gained a formal specialty status from the American Board of Medical Specialties. The palliative approach seeks to improve the quality of life of patients and their families facing life-threatening illness, through prevention and relief from suffering. It involves a multidisciplinary team of nurses, doctors, social workers and spiritual counselors, encompassing the physical, psychosocial and spiritual aspects of care.
The goal is to provide coordinated care and to enhance quality of life while pursuing curative treatments alongside symptom management — such as pain, depression and grief. Palliative care is not meant to hasten or postpone death, but to help patients live life as well as possible in the context of illness.
Studies show that when given to patients in earlier stages of a disease, this type of intervention can decrease depression and improve quality of life. According to palliative care experts at Harvard Medical School, Johns Hopkins Medical School and Massachusetts General Hospital, palliative care should be initiated at the same time as standard medical care for people with serious illnesses, and not brought up only after treatments have failed or been exhausted.
Over the last decade, palliative care has been one of the fastest-growing trends in health care. The number of palliative care teams within U.S. hospitals has increased from more than 600 in 2000 to more than 1,600 today. Currently there are 5,000 board-certified palliative care specialists in the United States (www.getpalliativecare.org).
As baby boomers age, we will see a corresponding increase in the number of patients with serious chronic conditions, creating a widening gap between demand and supply of palliative care practitioners. In addition, other barriers to attaining this care include poor reimbursement rates, scarcity of trained staff and information, and limited institutional budgets. Expanding access to palliative care services in hospitals and outpatient settings across both chronic and acute phases of illness will help clarify treatment preferences for individuals with complex diseases and may even lower medical costs.
Many patients with complex chronic conditions need both primary and specialty palliative care. It is possible for the patient, adult child or a geriatric care manager to find a primary care doctor with palliative care skills, or you can ask for a palliative care consult. The most important thing is to involve the parent-patient and make sure that she is educated by her doctor on her choices.
The key to success for any patient is having a strong partnership with her care providers — her doctor and palliative care team. The end result will be more services, better care, improved symptom management, and therefore a better quality of life.
Rita Clancy, LCSW, is the director of Adult Services at Jewish Family and Children’s Services of the East Bay. Her columns appear regularly in J.’s Seniors sections. Have questions about your aging parents? Email firstname.lastname@example.org or call (510) 558-7800, ext. 257.