By Mary Casterline, Senior Community Advisor, Living By Your Design, Inc.
The phone rings and your heart speeds up at the news: your mom has just been diagnosed with a chronic and painful disease. You know that there are many decisions to be made and that your mom and family will need information and support. This is more than just a medical condition; it will affect her quality of life and require the ongoing involvement of your family. Who do you ask for help? Where do you start?
Consult with her primary care physician to ask about Palliative Care. Within the last ten years, palliative care teams have become available in over three-fourths of large hospitals to support those with chronic and life-threatening illness, such as cancer, dementia and Alzheimer’s, ALS, and MS, as well as cardiac, respiratory, and kidney diseases. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families…through the prevention and relief of suffering by means of early identification, [curative treatment, and pain and symptom management].” It can include active medical intervention, monitoring of the disease progression, and/or hospice care while providing psychosocial and spiritual support for the patient and family.
What does Palliative Care look like? Palliative care teams coordinate services with your primary care doctor and other medical specialists. Teams generally include doctors who specialize in palliative care, nurses, and social workers. Additional support can be provided by dieticians, pharmacists, chaplains, and other therapists (physical, massage, respiratory, etc.). Care occurs in hospitals, clinics, nursing homes, and through hospice. Most insurance companies (including Medicare and Medicaid) will cover much of palliative care services. Be sure to confirm your insurance benefits with your insurance company, Medicare, or Medicaid.
Individualized approach with YOU at the center. Palliative care supports quality of life, helps with medical decisions, and provides assistance for coping with the disease through personalized case management tailored to the individual and family. You will be given information and education about your disease and treatment options. You may be asked, “What makes a quality day for you? What would you like to be doing now, but can’t because symptoms are interfering?” Symptom management can be for pain, shortness of breath, fatigue, anxiety and/or depression, and nausea and/or lack of appetite. Finally, palliative care can also include end-of-life planning and hospice services when curative treatment is no longer an option. You can gather more general information online at getpalliativecare.org and webmd.compalliative-care.
Help with Palliative Care decision making. There are organizations that can assist you in an advisory role in the decision-making process of legal, financial, and lifestyle options that often accompany serious medical conditions that may require palliative care. It can be helpful to work with a third party for guidance for important decisions for long-term planning. Upon finding such organizations, make sure they are certified in specified planning areas (such as in Gerontology), are well versed in ADA requirements, and highly versed in Medicare and insurance.
For more information or additional help in long term planning, contact Living By Your Design, Inc. We focus on the issues of older Americans: legal, financial, health advocacy, and lifestyle, with free guidance for senior community referral. Call: 309-285-8088. Website: www.LivingByYourDesignInc.com. Location: 809 W. Detweiller Dr., Peoria, IL 61615.