TREATING CHRONIC ILLNESS IN HOSPICE: Beyond the symptoms.

 
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When do we introduce hospice or palliative care?

As we all know, many Americans die from chronic illnesses each year. According to Kochanek, Murphy, Xu, & Arias (2019), the 15 leading causes of death in 2017 were:

1.       Disease of the heart (heart disease)

2.       Malignant neoplasms (cancer)

3.       Accidents (unintentional injuries)

4.       Chronic lower respiratory diseases

5.       Cerebrovascular diseases (stroke)

6.       Alzheimers disease

7.       Diabetes mellitus (diabetes)

8.       Influenza and pneumonia

9.       Nephritis, nephrotic syndrome and nephrosis (kidney disease)

10.   Intentional self-harm (suicide)

11.   Chronic liver disease and cirrhosis

12.   Septicemia

13.   Essential hypertension and hypertensive renal disease (hypertension)

14.   Parkinson disease

15.   Pneumonitis due to solids and liquids

As you can see from this list, most of these are associated with a chronic illness that the patient may have been battling for quite a long time (months-years). Additionally, these patients have likely been treated in the emergency room (ER), intensive care unit (ICU), and/or medical or oncology units at least once, if not multiple times with their progression of the chronic illness due to the numerous, debilitating side effects.

As providers who have worked in hospitals, we’ve all been there – “Oh, here is Mr. So-and-so again. He’ll need his usual breathing treatment and Lasix.”

However, at what point do we intervene with more guidance and support beyond the immediate symptom management?

HOSPICE NURSE EDUCATION

Education on the chronic illness and trajectory is vital to the care we provide our patients.

How can they be held responsible for caring for themselves or their loved one if they aren’t given all the information surrounding what to expect, what is normal, how long will this go on, etc.

 

To assess the patient and/or caregiver’s knowledge, there are some key questions that can give the medical provider further insight on how to best guide and treat the patient:

  • Tell me what you know about your illness?

  • Do you feel you’ve progressively gotten worse over the past few months or weeks?

  • Have you ever been told if/when you’ll be cured of the illness?

  • Tell me what a typical day looks like and feels like for you?

  • Does this make you happy?

  • What are some goals you have for your future? Do you feel you’ll be able to reach these goals as things are now?

 

In addition to asking the patient these questions, we must also ask ourselves as the medical providers, certain questions to direct appropriate treatment:

  • Are the interventions we offer in the ER, ICU and medical units prolonging the patient’s life?

  • Are these frequent visits to the hospital helping or hindering the patient’s quality of life?

  • Do the burdens of treatment outweigh the benefits?

  • Are these treatments and frequent visits to the hospital contributing to or increasing the patient’s risk for depression and anxiety?

  • Is the patient tolerating aggressive treatment?

  • Could switching to palliative care and/or hospice increase his or her prognosis?

 As with everything in medicine, no answer is black and white or set in stone (other than laboratory and pathology results, of course!). Therefore, each patient must be treated with individual care based on goals and how he or she has tolerated medical management and treatment.

I believe we must be better as healthcare providers in treating more than the patient’s immediate symptoms. We must arm the patient with as much knowledge as he or she needs, or wants, in order to make informed decisions on treatment and maintain as much autonomy as possible. If we aren’t guiding the patient along in their illness and educating every step of the way, we are only doing the bare minimum. And I don’t know about you, but I didn’t sign up for long hours of schooling and grueling patient care just to do the bare minimum! I did it to help my patients in any and every way possible.

References:

Kochanek, K., Murphy, S., Xu, J., & Arias, E. (2019, June 24). National Vital Statistics Report. Retrieved from https://www.cdc.gov/nchs/data/nvsr/nvsr68/nvsr68_09-508.pdf

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Jaymie Wilson, MSN, APRN-CNP, ACHPN,

Clinical Director of Client Services, PDCRx