As health care providers we focus primarily on the terminally ill patients and their comfort. But as a trained Palliative nurse I look beyond the terminally ill patient and assess the needs of the caregivers as well.
In a recent article written by Jane Gross for the New York Times titled, “Seeing the Invisible Patient,” she comments on the plight and the overwhelming burden caregivers endure.
In a flurry of comments from caregivers interviewed the common reactions were, “Not once in the years I cared for my mother did any of her physicians ask me, how I was doing. When was the last time I saw my own physician? Was I eating properly? Sleeping enough? Depressed?”
In a recent talk by Dr. Ronald D. Adelman, the co-chief of geriatrics and palliative medicine at Weill Cornell Medical College in New York City discussed the topic of
Caregiver burden and how physicians ought to be attending to the “invisible patient,” the one supporting an elderly family member with dementia or a heart condition or diabetes.
Given that there are currently 43.5 million people providing this kind of support to adult’s ages 50 and older, and that without them the long-term care system would collapse, you’d think that somebody ought to be paying attention to them would be a no-brainer.
Sad to say, physicians often look right past caregivers. A few years ago, Dr. Adelman published an article in JAMA detailing the problem, along with recommendations for addressing the burdens of this group.
The following should trigger attention to the caregivers, according to Dr. Adelman:
- Being a woman.
- The number of hours of care provided.
- The complexity of medical tasks, like dealing with wounds, catheter bags and complex medication regimes.
- Transitions from one kind and location of care to another, like from home to hospital, to rehab, to skilled nursing care or to hospice.
- Financial stress.
- Cognitive impairment in the patient.
- A less educated caregiver.
- A caregiver who lives with the patient.
- A lack of choice in assuming the caregiving role.
As we continue to care for our chronically ill and terminal patients let’s be aware of these “Invisible Patients” and provide them with some much needed relief and kindness.
