Notes from Ch1 of “End-of-Life Care” A practical Guide, 2nd Edition, by Barry M. Kinzbrunner and Joel S. Policzer
From: http://www.nhpco.org/history-hospice-care and http://cicelysaundersinternational.org/
The Why? The Need for prognosticating
“To refer a patient to hospice, Medicare/Medicaid Hospice benefit rules require a doctor to certify that the patient has a prognosis of 6 months or less.
Even without the Medicare/Medicaid rules, to provide any end of life care requires that the doctor be able to accurately predict the direction in which the patient would go if the disease took it’s course without intervention.”
Can we accurately prognosticate?
Yes. In one study, 85% of patients who were identified by physicians as having an 85% probability of dying during the next six months actually died!
A conclusion from the same study said that “physicians estimated prognosis quite accurately”
“A study based on 1990 Medicare claims data reported that more than 85% of patients admitted to hospices during a 3-month period died within 6 months, indicating that physicians were fairly accurate at predicting the prognosis of this group of patients.” However, the median survival of these patients was only 36 days.
In other research, Median survival for hospice patients may be as little as 22-29 days. That’s likely because physicians are reluctant to refer patients to hospice until the very end.
General Guidelines for predicting prognosis near the end-of-life.
- Clinical Progression of Disease
- Declining performance Status
- Palliative Performance Status (PPS) and Related Measures
- Activities of Daily Living
- Declining Nutritional Status
Hospice: A Historical Perspective (Who, Where, When)
From: http://www.nhpco.org/history-hospice-care and http://cicelysaundersinternational.org/
The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey.
The name was first applied to specialized care for dying patients by Dr. Cicely Saunders (physician), who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London.
1963 – Saunders introduced the idea of specialized care for the dying to the United States during a visit at Yale University. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care.
1965: Florence Wald, then Dean of the Yale School of Nursing, invites Saunders to become a visiting faculty member of the school for the spring term.
1967: Dame Cicely Saunders creates St. Christopher’s Hospice in the United Kingdom.
1968: Wald takes a sabbatical from Yale to work at St. Christopher’s and learns all she can about hospice.
1974: Florence Wald, along with two pediatricians and a chaplain, founded Connecticut Hospice in Branford, Connecticut.
Predicting Prognosis (What, Why, How)
How to decide when End-of-Life Care is Needed
| What was a challenge that the hospice movement needed to overcome? | Predict prognosis. How do you decide when a person is at the end of their life so that end-of-life care can be given? How do you know when End-of-Life Care is Needed? |
| Why? | To provide end-of-life care, you need to first to determine when a person has come upon the end of their life. And to do it on a large scale, you need accurate models for predicting when a person was going to die soon (e.g. within 6 months.) |
| How is the challenge being solved? | A lot of research has been done and to develop guidelines for predicting prognosis. We predict prognosis in three ways:
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DECLINING PERFORMANCE (FUNCTIONAL) STATUS
- The PPS
“Because the KPS was designed specifically for estimating performance status for cancer patients alone, a modification of the KPS, called the Palliative Performance scale was developed in the mid-1990s to cover all disease processes. In addition to the activities already measured by the KPS, the PPS assess patient characteristics of food/fluid intake and level of consciousness.”
KPS (Karnofsky Performance Status) is named after David Kanorfsky, an American oncologist, who developed it. He did much of his training at Harvard.
*“Research has shown that there is a rapid fall in KPS of at least 20 to 30 units during the last 2 to 3 months of life and the median survival of patients with advanced cancer was found to correlate with the KPS rating. It was also shown that patients with active symptoms, including dyspnea, anorexia, weight loss, dry mouth, and difficulty swallowing, have shorter survivals than patients with the same KPS rating who are not symptomatic).
* “Clinical experience + research has shown that a KPS or PPS score of ≤ 50 or an ECOG score of 2 or higher is predictive that the patient may have a prognosis of 6 months or less. However, a score of greater than 50 doesn’t necessary indicate a prognosis of more than 6 months. You need to take note of patients who may initially have higher functionality score but also have unfavorable prognostic disease states. E.g. A patient with stage IV untreatable carcinoma that still functions at KPS or PPS score of 60 should not be excluded from consideration for hospice care.”
2. ADLs
“The most common method of assessing the functional status of patients with diagnosis other than cancer is by the evaluation of what is called Activities of Daily Living (ADL)”
“The evaluation of ADLs on a serial basis has been found to be an important indicator of prognosis. Studies have shown that elderly patients who had significant ADL deficits had a median survival of 6-months, with a 2-year mortality of 80%).”
“In a study evaluating various factors as predictors of prognosis in hospitalized elderly patients, ADL deficits were the most important predictor of 6-month mortality, outranking diagnosis, mental status, and even whether or not the patient required intensive care.
**”Comparison of ADL deficits with KPS ratings has shown that patients with a KPS score of 50 typically have dependence in at least 3 of the 6 ADLs.”
DECLINING NUTRITIONAL STATUS
10% unintentional weight loss
“Another key indicator of poor prognosis is a decline in a patient’s nutritional status. This is best expressed as an unintentional weight loss of 10% of normal body weight over a period of approximately six months, with the loss of weight usually due to the patient’s life-limiting condition.”
**Note: You must first eliminate reversible causes of weight loss.
Body Mass Index (BMI) of <20
BMI is another way to evaluate a patient’s nutritional status near the end of life. It might give a truer picture than the weight alone since it considers both the weight and the height of the patient.
BMIs less than 20 showed higher risk of mortality in the six months following hospitalization.