Friday, August 30, 2013

Cancer Screening in Persons With Dementia. Just Stop It. Please.



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, led by Lexy Torke at Indiana University, shows that caregivers often have to work hard to advocate on behalf of their loved ones and protect them from cancer screening.

Torke 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.

by: Ken Covinsky

6 comments:

Sam said...

In my experience, people with dementia can benefit from treatment for cancers that would otherwise be painful. If they are in earlier stages of dementia where they still can interact, it would be wrong to just let these cancers go untreated or worse, to use the lack of treatment to cause an early death.

Bruce Scott said...

Sam...

For the cancers that you are talking about, were they found via screening?

There is a difference between not screening for a cancer and not treating a cancer.

Cancer screening only finds cancers that were not clinically apparent. If you are talking about a cancer that was found by non-screening methods, then they do not apply here.

The very nature of screening means that you'll find a higher percentage of cancers that way that were slower growing cancers. Cancers that were unlikely to have any effect during a dementia patient's limited lifetime.

It is perfectly consistent to both choose NOT to screen and then choose TO try certain cancers that might become apparent clinically. And you can also choose to only try certain cancer treatments that are likely to cause net improvement in quality of life. It takes a lot of talking to judge patient/family wishes regarding goals of care in order to guide them through these sorts of decisions. (These are the sort of discussions that many geriatricians like having and pride themselves on being good at.)

Bruce Scott said...

Part of the reason for the problem is related to the fact that not all doctors communicate that (Alzheimer's) dementia is a progressive, terminal illness. It has a significantly reduced life expectancy. An Alzheimer's patient simply does not have the 10+ year life expectancy needed to show benefit from these screening. (And that isn't even taking into account the harms of screening, which rise in this population.)

Why don't doctors communicate this? Some don't actually know it. Some don't feel they have the time. (We don't really get paid for it.) It's not an easy conversation to have. Some will say "it's not really my patient" (hospitalist, who thinks the primary care doc should have the discussion) or "it's not really my job" (primary care doc who thinks a neurologist should have the discussion).

If doctors don't communicate the idea that Alzheimer's is a progressive, terminal illness, then there is really no way we can judge family members for not knowing it.

If you are a primary care doctor reading this: first of all...hooray! Second of all, you probably have a geriatrician in your area that would be happy to see your dementia patients in consultation (so you can keep primary care relationship). This can be for workup (if still needed), treatment options (pharma and nonpharm, as well as potentially to discuss why the most common pharm treatments are not nearly so useful as many folks think), and for the Geriatrics Procedure (the family meeting).

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Aliska said...

Cancer screening aims to detect cancer before symptoms appear. For cancer lots of tests are required like bold test, urine test and medical imaging. Every aspect of screening is carefully monitored against these standards to make sure that the service you are offered is of the highest quality. Staffs who are appointed for cancer screening must be highly qualified.