Turning to Care When There is No Cure

In the healthcare world, so much of the drive of successful outcomes centers on curing. In fact, we’ve come to expect a cure for just about everything, but the reality is that we live in a complex world where not every problem has a solution. Like jazz, not every dissonant note in our lives resolves; not every disease can be cured.

As professionals who care for an aging population and for those with ongoing chronic illness, it is apparent that not everyone is going to get better, that the end-of-life is a close reality that we cannot avoid. The question we must ask ourselves is this: what is the difference between curing and caring?

Rachel Naomi Remen, MD is a physician who has worked with patients battling life-threatening diseases and listening to their stories, long before the existence of hospice or in-home care as we know it. In her words,

“Basically, curing is about repair and healing is about growth. So curing is something we do to others and healing something we evoke in others. Curing happens at the level of the body and leads to a re-normalization of physiology. Healing happens at the level of the person and involves an evolution and refinement of the individual, a deepening of the capacity for emotional life, mental life and spiritual life and the furthering of personal wholeness and not physical health. Healing promotes the quality of life and the capacity to engage with life.”

Her words serve as an inspiration as we look to our clients with a variety of dissonant notes in their lives such as MS, traumatic brain injury, cerebral palsy, ALS, Alzheimer’s and other dementias. How do you provide healing and care for someone when there is no cure? It begins in standing in the hope that a cure will be found, certainly, but it also acknowledges the human capacity to engage with life even when it is most fragile.

Care with Longevity

After an event such as a discharge from the hospital or a refusal of treatment, the family is often the first to hold the question, how do we care well for this loved one when we know we cannot cure them? As family become fully responsible for the care of their loved one, coordinating services, and supporting their loved one’s everyday needs, they are also helping them find a new normal and plan for the future. In many cases, this role of caregiver can extend over years. According to WebMD, “The average survival time for people diagnosed with a form of dementia is about 4.5 years. Those diagnosed before age 70 typically live for a decade or longer.” An individual with ALS, typically lives 2-5 years with the disease, according to the ALS Association, although as they point out, the disease is variable and life after diagnosis can extend beyond 5 years.

As professionals outside of the healthcare world, Care Managers are able to have a foothold in the medical world while keeping a foothold in the world of the family. Without an allegiance to a hospital, or healthcare group, Care Managers are free to work solely for the client and act as an advocate for family. At the core of their methodology and philosophy of care is the understanding that well-being is complex. We cannot solely look at an individual’s physical needs in isolation from their financial, legal, mental health, home environment, social, and everyday living needs. Each plan of care that a Care Manager creates is driven by a holistic approach that takes into consideration these components that make each person unique.

Making a Difference for Families

When engaged in the marathon of long-term care it can be invaluable for families to have not only a plan of care, but to be accompanied by a guide whether it is over several weeks or several years. In this role of healthcare guide, Care Managers are able to provide:

  • Coordination of appropriate care services and reprieve
  • Assessment and recommendations for housing and long-term care
  • Disease education and help understanding and planning for its progression
  • Support and guidance for care and communication
  • Mediation for family dynamics and difficult decisions
  • Navigation of benefits, long-term care insurance, Medicare, and Medicaid
  • Assistance in engaging loved ones in activities and relationships that increase quality of life

Behind the numerous logistical ways a Care Manager supports family caring for a loved one, they also provide the intangible emotional support of experts whose presence balances intelligence with compassion. They understand that good care has to do with this healing that Dr. Rachel Naomi Remen is speaking of that, “promotes the quality of life and the capacity to engage with life.”  

The Aging Life Care Association™ has a directory on their website that is a wonderful resource for finding this caliber of professional anywhere in the US. Visit them online at www.aginglifecare.org.  

Published on May 11, 2015.