GRACE :: Coping with Cancer / Social Work

Dr Harman

Caregivers: The Most Important Care Providers for Cancer Patients

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Behind every patient with cancer, there are caregivers. In the medical literature, this caregiving is referred to as “informal caregiving,” which simply means that it is not paid caregiving from a home care agency or care provided in a skilled nursing facility. Informal caregiving provides the majority of care to patients in this country; if informal caregivers were paid, their value would exceed that of all home care agencies and skilled nursing facilities combined.

What do caregivers do?

The better question is, what are they not doing? In a 2010 study from the University of Minnesota and NCI, caregivers of lung and colon cancer patients were surveyed regarding their activities and stress and resources; these were caregivers who provided 50% or more of their loved one’s care. What they found was that caregivers, without formal training, were having to monitor for treatment side effects, manage troublesome symptoms like pain and nausea, administer medication, and decide on when to call a doctor or give medication. This is evident here at GRACE with the very thoughtful questions and discussions that caregivers have on behalf of their loved ones. Half of the time, these caregivers were also working their own jobs; 1 in 5 had health problems. In studies of caregivers not specific to cancer, caregiver stress leads to more healthcare, both for themselves and for the loved ones for whom they care. In comparing caregivers to people who don’t do caregiving, caregivers of patients with cancer have a higher incidence of mood disorders, i.e. depression and anxiety, as well as stress-related health problems. Compared to caregivers of patients with Alzheimer’s, a disease known to carry significant caregiver burden, caregivers of cancer patients experience the same amount of psychological stress. Continue reading


Advance Directives: Nuts and Bolts

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The term “advance directives” has been in use for decades now, particularly since the passage of the Patient Self-Determination Act of 1990 which propelled advance directives into hospitals and health care facilities as the document that would end confusion about treatment preferences and surrogate decision-makers. Unfortunately, this has not reflected the entire experience with advance directives; research has shown that even when those documents exist, clinicians and health care institutions do not follow them well. There have been some benefits to advance directives, even if they did not solve all the problems surrounding medical decision-making and communications between health care providers and patients. In one study of patients who passed away in the hospital, the existence of advance directives was correlated with less stress for those family members compared to the family members of patients who did not have advance directives.

What are advance directives?
They are legal documents that pertain to a patient’s designated proxy decision-maker and/or the patient’s treatment preferences. Advance directives are not just for people who are imminently dying. They are tools in the process of advance care planning and are for patients who are preparing for the future, in the event that they have a life-limiting illness or life-threatening condition. Every state in the U.S. has some kind of advance directive document in place. You may have heard terms like “living will” or “durable power of attorney for health care” or “DPAHC.” A “living will” refers to the portion of an advance directive that gives treatment directives; as these preferences are applied to when the patient is living, it is referred to as a living will. The “DPAHC” refers solely to the document that designates the proxy decision-maker for health care, separate from the durable power of attorney for finances. The DPAHC and the DPAF can be the same person or two different people. A patient can override their own advance directive at any time—both the treatment preferences and the proxy decision maker.

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