patient care

Disease Trajectories

Many people will ask you about your loved one’s disease progression. Some may not be surprised by the patient’s decline, but others may think it is sudden or may be skeptical that you’ve pursued all treatment options.

There are generally four disease “trajectories.” Once you identify what has occurred with your loved one, it may be easier to explain their terminal illness by using these examples.

 Long slow decline - figure sliding down slanted line

Slow Decline. This scenario is usually the least surprising because the patient has been gradually declining over a long period of time. Everyone recognizes that their quality of life has diminished, that they’re “tired” and have multiple factors that are adversely affecting their health.

 stair step decline - figure walking down stairs

Stair Steps. Patients in this situation usually have a long-term chronic disease that responds to treatment, plateaus for a while, then requires more treatment, then plateaus…over a period of time. While the patient at times appears to be thriving, they don’t snap back as quickly or completely after each medical episode.

 tight rope on a windy day - figure hanging on upside down to tight rope

Tight Rope on a Windy Day. These patients are actually very sick and often have multiple serious conditions. But, through careful disease management, physicians are able to “balance” their various health risks. Families often don’t understand just how precarious their loved one’s health is and don’t fully grasp that even a small medical episode can become a terminal condition…just like a gust of wind can cause a tightrope walker to topple.Cliff effect - figure falling over an edge

 

Cliff Effect. Modern medical care can work wonders to keep seriously ill patients alive. Often times, the disease continues to progress, but the treatments and medications mask the patient’s decline. When the disease finally outpaces the care, the patient “goes over the cliff” with little or no warning, sometimes leaving family and friends wondering what happened.

Experiencing...

     

Is It Time?

Suggested Reading

Little Tree: A Story for Children with Serious Medical Problems

By Joyce Mills, Ph.D.

Love You, Teddy: A Tail of Loss and Hope

By Virginia Ulch

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

By Maggie Callanan and Patricia Kelley

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"I would like to thank everyone who was a part of my mom's care. She was at home and had hospice care. I know that I wouldn't have been able to keep my mom with me if it wasn't for hospice. Mom lived with me for 20 years with early onset Alzheimer's. And when the end of life part came she was in house and she had such caring nurses, aides and doctor. Our care made the end of her life very peaceful and that meant so much to our family."