"at least I don’t have cancer"
That’s what Mrs G said soon after being diagnosed with congestive heart failure.
But as her provider, before you offer her tacit agreement (because you think that’s being empathetic- but, sorry, it’s not) while continuing on with your visit, take a moment to pause.
What is she really saying?
Mrs G is likely expressing her fears about what her future may hold. So, if you merely nod at her statement, and continue on with the visit, an important opportunity has been missed. An opportunity to start an honest discussion about what a diagnosis of congestive heart failure may truly mean. And this information is critical to help guide Mrs G as she makes treatment decisions going forward.
But to do this, you must have a clear understanding yourself.
Do you?
This information can help
3 basic trajectories for patients with chronic disease.
- the top diagram is the typical trajectory for patients with ultimately incurable cancer: the patient maintains excellent function for potentially years, with the period of decline only in the last 1-2 years of life.
- the middle diagram applies to patients with diseases such as heart failure or copd: the patient has an overall functional decline over many years with periods of acute exacerbations/ likely hospitalizations (each of which could result in death). After each acute episode notice that although the patient survives, they are at a lower functional level.
- the bottom diagram is typical for patients with dementia or those with multiple chronic diseases: their trajectory starts at a low functional state with years of progressive decline/dwindling.
so let’s go back to Mrs G
Mrs G’s comments demonstrate that she (as well as many other patients/providers) likely associates a cancer diagnosis with years of severe functional impairment and debilitating symptoms (pain, nausea)- i.e., a prolonged period of great suffering. She feels lucky with the hand she’s been dealt, because overall she’s feeling pretty good. So far.
However, as you can see from the above mentioned diagrams, patients with heart failure may have a significant symptom burden over a potentially longer period of time. Unless she dies from a sudden cardiac event, her future life may involve repeat hospitalizations, need for multiple invasive/complicated procedures or operations, accompanied by progressive functional decline. For patients who value their independence, this disease has the potential to cause more prolonged suffering (both physical and emotional) than does cancer.
As her provider- it is critical to have honest discussions with Mrs G and her family about what may lie ahead. Is she someone who values her independence, and would be devastated to have to live dependent on others? Or is she someone who as long as her mind is clear, can live with disability? Does she want to live as long as possible, to perhaps see a grandchild born or a child graduate from college, so is willing do anything to live as long as possible even with disability? These are the issues you need to help her explore, because they are critical to decision-making. But it’s not a single discussion. Over time you must help Mrs G explore what is truly important to her. And this includes a discussion about transitioning to comfort care when the time comes that the burdens of further treatment are too great for her.
This is a critical part of the job of being a provider. It’s how you go from feeling like a mere orderer of tests and treatments, to really connecting with your patients. And remember, you have all the information and have the best understanding of the reality patients face; it’s up to you to help translate this information in a meaningful way so patients/families can make informed decisions.
And in some fashion, it should begin early after the diagnosis is made. Waiting until an emergency comes up to have this type of discussion is not fair to the patient and their family. Because these events will be coming at some point in the future.
how understanding disease trajectory can affect a patient's treatment decisions.
Art Buchwald was a beloved, nationally syndicated columnist based in Washington DC. During the 1960’s-1990’s no politician was spared his rapier wit. He had diabetes for many years and was afflicted by a multitude of its complications including heart disease, peripheral vascular disease leading to limb loss and chronic kidney disease. At age 80, his kidney function progressed to the point where his doctors recommended starting hemodialysis.
Most patients (healthcare providers too)- think what when chronic kidney disease progresses to end stage renal failure, dialysis is an automatic choice because it is a definite life-prolonging treatment. However, particularly in the elderly, this is not necessarily true. Studies have shown that for patients >75 yrs of age, average life expectancy may be no different whether or not dialysis is started. And there are significant burdens associated with dialysis: from vascular access procedures, going to dialysis centers for several hours 3 times/week, coupled with the physiologic effects of days on and off dialysis to name just a few. Although it may be unknown how long an individual patient may survive after starting dialysis, on the average, that patient’s life expectancy may not be improved by going down the dialysis path.
So, for Mr Buchwald, dialysis was likely not a cure-all. Add to this, his disease trajectory follows that of the bottom diagram as previously described- whether or not dialysis is started. He was already tired from all the years of living with diabetes and its complications, would he want to continue along this path?
After weighing his options, and understanding the true utility of dialysis in light of his expected disease trajectory, he decided that what was most important for him was to optimize the quality of the time he had left to live.
He declined dialysis, and enrolled in hospice.
It was the happiest year of his life.
Everyone thought he was dying, so he had a non-stop collection of visitors and well-wishers. And he was mentally sharp enough that he continued writing and publishing.
“Heaven can wait”: told he’d be dead within a few weeks in Feb 2006 if didn’t start dialysis, still alive and in hospice having fun May 22, 2006
As the self-described “man who would not die,” the humor columnist Art Buchwald was a strange bedfellow with the hospice movement. But in the months between his extended hospice stay and his death from kidney failure on Wednesday at age 81, Mr. Buchwald was a living testimonial to the benefits of hospice care.
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