Nora McKee, MD
Department of Academic Family Medicine
University of Saskatchewan
Are objective tools available to aid in reaching a prognosis?
How long are palliative care benefits available?
What features suggest a shortened survival time?
Patients who are referred for palliative care support have many questions. By this stage in their illness they will know that no active curative treatment is available for them and they, and their physicians, will be meeting challenges that lie beyond the experience of diagnosis, treatment and outcome. Many physicians have less experience and feel less comfortable in these areas. This module is designed to answer some of the questions asked of physicians in this situation, and to give evidence-based support for palliative care approaches and techniques.
After completing this module the physician will be able to;
- Recognize and discuss the needs of palliative care patients to receive prognostic information
- Understand the factors to be taken into consideration in communicating prognosis
- Understand physician-related issues in reaching and communicating prognosis
Many cultures recognize impending death. In the holy city of Benares, families and priests bring dying people to end their lives in charity hospices (which do not admit cancer or infection cases). When asked how they know when to bring patients to the hospice the family members and priests answered, "when the patient no longer wanted to eat or drink". A 14-day stay is allowed but 10% died on the day of admission, 84% in the first week, and all by 17 days. Our system is very different from this, but still faces the same prognostication concerns.
- Patient autonomy and need to know: Palliative care patients recognize that their disease is progressing inexorably, but deserve to share the physician's estimation of life expectancy in order to make their own end of life decisions, both practical and spiritual.
- Practical implications in planning care: Patients and their families may need to plan time together and make decisions about estate management, funeral planning and other practical issues.
- Timing of palliative care referral: The average referral time is 1-2 months before death, though more than 6 months of benefits are available, including drug coverage, home care and nursing support. Patients should be referred when they have a life-threatening illness and will live for months rather than years.
Are medical staff effective in prognosticating?
- Significant variation exists among health professionals in ability to predict survival: In a study of 108 hospice patient charts in which community oncologist, university oncologist, social worker, nurse and general practitioner estimated survival, correlation with actual survival ranged from 0.02 for the community oncologist to 0.41 for the nurse.
What tools are available to help in prognostication?
- Palliative Performance Scale, modified from the Karnofsky Performance Scale used by oncologists (see reference section): This scale assesses function ranging from 0% (death) to 100% (normal function), and was developed by the Victoria Hospice as a communication tool and for prognostic use. Studies have shown that weight loss, performance status and age are the major predictors of survival.
- Palliative Performance Index: A scoring system used in a retrospective cohort study in Shimoka, Japan to determine prediction of survival in terminally ill cancer patients. It uses the palliative performance scale and other measures including oral intake, edema, dyspnea at rest and delirium. The higher the score the shorter the length of survival.
PPI > 6, survival < 3 weeks (sensitivity 80%, specificity 85%)
PPI > 4, survival < 6 weeks (sensitivity 80%, specificity 77%)
Issues concerning non-cancer palliative patients
- As our population ages increasing numbers of patients with advanced illnesses such as heart disease, lung disease, cerebrovascular disease and dementia will require high quality care for prolonged periods of time. Treatment goals and decisions related to care have to depend on prognosis, but the course of many chronic diseases is highly unpredictable, ranging through sudden death from an unpredicted cause (? e.g. infection), through steady decline with a short terminal stage, to a slow decline with periodic crises and eventual sudden death.
- Factors thought to be prognostic are:
- Weight loss of 10kg or more
- Cognitive failure with MMSE <24
- Dysphagia to solids or liquids
- Decreased serum albumin
"How long have I got?"
Barriers to clearly communicating a bad prognosis:
- For the physician acknowledging a poor prognosis seems to be an admission of failure
- The patient may feel abandoned
- The patient may be harmed by anxiety and despair
- The physician may have unresolved issues about mortality
- The physician feels discomfort with the patient's anticipated emotional response
- Most are generally satisfied with the way news is presented
- Prefer physicians to get to the point quickly
- 22-26% of patients felt the need for more information
- Best given in person, not over phone and not in the recovery room
- Patients informed by a physician whom they know well are more satisfied
Advice from experience:
- Anyone who states an exact time, such as a number of days, weeks or months will usually be taken literally by the patient/family and will virtually always be wrong.
- Prognosis is not a one-time pronouncement, but rather a time frame, which is adjusted and tightened on an ongoing basis.
- Try "You need to know that every situation is different, and I can only tell you what usually happens, not what will happen to you personally. Most people in your situation live only a few months. Of course some will live longer than that."
- Use broad time ranges
- Hours to days
- Days to weeks
- Weeks to months
- Months to years
- Don't assume that patients want to know everything at once (or at all). Find out what they want to know and why. Try "I want to make sure that you and I are on the same wavelength. Some people want to know everything that is going on with them both good and bad while others do not really want to hear bad news. What kind of person do you think you are?"
- Remember cultural differences
- The more rapid the patient's decline the more accurate the prognosis
- If the patient is still eating solid food, unless a major complication intervenes, death is usually more than 2 weeks away
- The will to live or let go frequently affects prognosis
Reference for the PPS:
Anderson F, Downing GM, Hill J. Casorso L. Lerch N. Palliative Performance Scale (PPS): a new tool. J Palliat Care 1996;12(1):5-11.
Reference for the PPI:
Morita T, Tsunoda J, Inoue S, Chirara S. The Palliative Prognostic Index: a scoring system for survival prediction of terminally ill cancer patients. Support Care Cancer 1997;7:128-33.
Reference for Karnofsky's Performance Status:
Yates JW, Chalmer B, McKegney FP. Evaluation of patients with advanced cancer using the Karnofsky Performance Status. Cancer 1980;45: 2220-2224.