Advance care planning is a critical piece of the decision-making process for patients with chronic diseases. Ideally, the advance care planning conversation should happen with loved ones long before a crisis occurs. It may also take place in a physician’s office as part of the care planning process. There are many resources available to assist in initiating the conversation. The National Hospice and Palliative Care Organization (NHPCO) collaborates with national, state, and community organizations to raise awareness of the importance of advance care planning. Their website, nhpco.org, has resources explaining advance care planning and provides forms for advance directives. Unfortunately, many times advance care planning has not occurred, and the conversation takes place in the hospital during an acute exacerbation of a chronic condition.
While initiating the concept of palliative and/or end of life care in a crisis may not be ideal, having a case management team familiar with how to approach these conversations is critical. Additionally, being familiar with hospice admission criteria will assist the team in determining if a hospice referral is appropriate. The Centers for Medicare & Medicaid Services (CMS) has guidelines for Medicare beneficiaries that can be useful in evaluating patients with other healthcare coverage since Medicaid and health insurance providers often follow these guidelines. Assessing the patient’s current condition and how their disease has progressed will provide the information needed to evaluate if a referral to hospice is timely. Discussing the patient’s status with the hospice team prior to discussing it with the patient and their family may be helpful in determining if the patient’s condition meets hospice admission criteria. This is particularly important for the Medicare beneficiary as payment is dependent on certification of the terminal condition.1 Medicare coverage for hospice requires a physician’s certification that the individual’s prognosis is a life expectancy of 6 months or less if the terminal illness runs its normal course. Determining a life expectancy of 6 months is based on the clinical judgment of the patient’s physician.2 The use of the non-disease-specific and disease-specific guidelines can help validate the physician’s determination.
There are disease- and non-disease-specific guidelines that assist in determining a life expectancy of 6 months or less. Non-disease-specific baseline guidelines include physiologic impairment of functional status as demonstrated by a Palliative Performance Score (PPS) less than 70%, dependence on assistance for two or more activities of daily living, and presence of co-morbidities that may not be the primary hospice diagnosis.3
CMS has disease-specific guidelines that are to be used in conjunction with the non-disease-specific. Some diseases, such as cancer and amyotrophic lateral sclerosis (ALS)4 tend to progress in a linear fashion over time. However, many chronic diseases do not follow that pattern of decline. Guidelines for these conditions are particularly helpful in identifying the stage in a chronic condition that may trigger a referral to hospice. Chronic diseases affecting the heart, lungs, liver, and kidneys often result in an increasing number of hospital admissions and emergency department visits. When these patients have exacerbations of their disease, they rarely recover to their previous clinical state. Often the decline for these patients is gradual. However, there are disease-specific indicators that assist in determining the prognosis.
Heart disease patients tend to have this pattern of gradual decline. However, they can be considered to be in the terminal stage of their illness if they have been optimally treated with diuretics and vasodilators, or those not on vasodilators because of hypotension or renal disease and are not candidates for surgical intervention or have declined the procedure. Additionally, the patient must be classified as New York Heart Association (NYHA) Class IV and have significant heart failure or angina at rest. Class IV heart disease patients are unable to do any physical activity without discomfort. Other factors that support the terminal stage of heart disease, but are not required, include treatment of resistant supraventricular or ventricular arrhythmias, history of cardiac arrest, unexplained syncope, or brain embolism of cardiac origin.5
Patients with chronic pulmonary disease have similar decline patterns to heart patients, with symptoms and laboratory values that support the determination of a life expectancy of 6 months or less. The following must be present: disabling dyspnea at rest; poor or no response to bronchodilators resulting in decreased functional capacity; progression of the disease as evidenced by increasing hospital utilization for pulmonary infections and/or respiratory failure or increasing physician home visits; hypoxemia at rest on room air (pO2 less than or equal to 55mmHg), oxygen saturation less than or equal to 88% or hypercapnia (pCO2 greater than or equal to 50 mmHg). Other existing conditions such as right heart failure secondary to pulmonary disease (Cor Pulmonale), unintentional weight loss greater than 10% of body weight in the most recent 6-month period, or resting tachycardia greater than 100 beats per minute support the determination of terminality, but are not required.6
Neurologic disorders or disease may not be as straightforward in terms of laboratory results or treatment failures. Dementia patients should demonstrate all of the following: stage7 or beyond according to the Functional Assessment Staging Scale,7 be unable to ambulate, dress, and bathe without assistance, intermittent or constant urinary and fecal incontinence, and no meaningful verbal communication. Patients should have had one of the following in the last 12 months: aspiration pneumonia, pyelonephritis, septicemia, multiple decubitus ulcers, recurrent fever after antibiotics, or an inability to maintain sufficient fluid and caloric intake with a 10% weight loss during the previous 12 months.8 Stroke patients are assessed in a similar fashion as dementia patients. The following guidelines support a terminal prognosis for stroke patients: Karnofsky Performance Scale (KPS)9 of 40% or less; inability to maintain hydration and caloric intake with a weight loss greater than 10% in the last 6 months or greater than 7.5% in the last 3 months; a current history of pulmonary aspiration not responsive to speech therapy intervention; dysphagia severe enough that the patient cannot receive enough food or fluids to sustain life and has declined artificial nutrition and hydration.10
These are a few of the diagnosis-related guidelines outlined by CMS. A central location for all of the guidelines can be found on the CMS website. While these guidelines are related to Medicare coverage, many health insurance providers use them to determine eligibility for hospice care.11 Care managers should check with the patient’s insurance provider to be sure they have hospice coverage. Medicaid also covers hospice care in most states. Despite the payor, a physician’s certification of the terminal illness is required as part of the hospice admission process.
While having a conversation about end of life care may not be easy, particularly in a hospital setting, having a case management team well versed in hospice admission criteria will help in determining whether it is the appropriate time to initiate it. There are many resources available related to how to start the conversation. The Hospice Foundation of America has resources and suggested questions to start the conversation.12 Finding out what is important to the patient and what they want to do with their life is key to introducing the concept of end of life care.