Stop cancer screening in patients with dementia

Cancer screening is of little benefit in persons with dementia but can cause very serious harms.   Older persons with dementia have limited life expectancies which makes any benefit from cancer screening very unlikely.  This is because cancer screening works by identifying a cancer many years (generally at least 5-10 years) before it would threaten health.

But cancer screening tests cause lots of burdens when given to persons with dementia.  The test itself often leads to discomfort, distress, and agitation.  Even worse, the results often demand a further cascade of tests that lead to more serious side effects.  Sometimes it leads to highly morbid treatment for an asymptomatic cancer that would have never caused any problems in the patient’s remaining life span.

The vast majority of experts in cancer screening and geriatrics agree that cancer screening in persons with dementia is a really really bad idea.  So, you would think we would just step doing it.  But think again.  An important study in the Journal of the American Geriatrics Society shows that caregivers often have to work hard to advocate on behalf of their loved ones and protect them from cancer screening.

The study conducted focus groups with 32 caregivers of patients with dementia.  Often, it seemed that patients were being subjected to check box medicine that ignored the special needs of dementia patients.  Automated reminders generated by the health system directed the patient and physician to pursue the next round of cancer screening.  This is yet another example of how one size fits all guidelines and quality indicators can lead to bad care for frail older patients.

Caregivers knew that they wanted to focus on the quality of life of their family member, but the medical train of inertia conspired against them.  Often, caregivers suggesting the test not be done met resistance. For example, one caregiver was told by her mother’s physician, “let’s just do it once more to make sure she gets a clean bill of health.”  Good grief.

Many caregivers felt that clinicians seemed blind to the distress these tests often caused for patients.  The impact on caregivers was rarely considered.  For example, some caregivers noted that the care demands placed on them by a colonoscopy — both the prep before the test, and the care needs afterwards, were exhausting.

Patients with dementia have substantial needs.  They need providers focused on their quality of life and symptom management.  The management of behavioral symptoms often requires expert and intensive management.  They also need providers focused on the burden and quality of life of the caregiver.  It seems almost impossible that these important big picture issues are being attended to when a patient with dementia is getting cancer screening.

It is ironic that many health care quality improvement systems credit the provider and health system with good quality of care when a patient with dementia is subjected to cancer screening.

It is just the opposite:  A virtually certain indicator of poor quality of care.

Ken Covinsky is a professor of medicine, University of California, San Francisco who blogs at GeriPal.

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  • elizabeth52

    I couldn’t agree more. We’re calling a halt to cancer screening in our 81 year old mother. The last colonoscopy and GA messed up her many daily medications, including Warfarin, and knocked her around, leaving her confused and agitated for several days. The medication took weeks to sort out as well.

    Our mother does not have dementia, but confusion is becoming an issue, some days are worse than others, so we’re watching her closely. Mum has always been compliant with screening, so turning her off the idea will not be easy. Every test though causes her to slide a bit more and for an active older woman, takes some of her precious time. After the colonoscopy she couldn’t return to her weekly yoga class for 4 weeks. Gym was out as well.
    I’m not compliant with screening “orders”…I do my own research, weigh up the risks and benefits and make an informed decision. I’ve said No to three screening tests so far.
    So many people, especially women, have been led to believe they must screen or they’ll die a grisly and preventable death. That’s a disrespectful and dishonest approach, all screening carries risk and only the individual can say the risks are worth the benefit. (few are given the opportunity)
    Nice to read a sensible article on screening, rather than the usual, “Get Screened”….

  • JPedersenB

    My father’s doctor insisted that he get a colonoscopy at age 88. He already had severe dementia. He was left with a hernia that they refused to correct because of his age….

  • MikeWB

    As a family practice physician at an HMO, I’ve experienced the other side: caregivers/DPOAs who want “everything done” (including screening tests) and who harbor the suspicion that you are abandoning (when you’re actually looking out for) their loved one. It’s a difficult, time-consuming conversation, and I can understand why some providers just “go-with-flow” (especially w/ the specter of malpractice attorneys and Medicare “quality” reviews for “benchmarks” hovering over this) and order the screening.