Palliative Care Strategies and Hospice
Hospice eligibility requires that patients have a prognosis for survival of less than 6 months and historically has not been thought of as being compatible with pursuing curative treatment. More recently, palliative care has presented itself as a viable option in bridging this gap. The National Consensus Project for Quality Palliative Care states that palliative care is interdisciplinary, with a focus on care of providing optimal functioning, relief of suffering, and support of optimal quality of life for patients and their families regardless of the stage of disease or need for other therapies. This is operationalized by effectively managing distressing symptoms, supporting the patient and family with psychosocial, spiritual, belief, cultural, or value concerns and preferences, including those with life-threatening or debilitating illness.
National clinical guidelines for CHF and COPD include language regarding ongoing discussions about prognosis, advance directives, palliative care, and hospice but do not specifically address when to refer patients for hospice or palliative care. National clinical guidelines for ESLD do not discuss either of these issues. In a review of clinical guidelines for EOL content in chronic kidney disease, ESLD, COPD, and CHF, guidelines for ESLD were the only ones that failed to identify clinical or psychosocial criteria that should lead providers to think about, evaluate, or discuss palliative care or hospice.
In both COPD and CHF, profiles have been identified that suggest types of patients who are at high risk of mortality or morbidity in the next 6 months in whom discussions about EOL issues would be especially important. It has been suggested in the transplant literature that the optimal time to discuss EOL care and advance care planning is when patients are listed for transplantation and that a referral for hospice should be made when MELD scores reach 17. However, on the basis of HRQOL data and clinical experience, we know that patients with ESLD experience a significant amount of physical and psychological functional impairment and adverse effects of complications long before that time. For many patients, waiting until the MELD score reaches 17 would be too late for meaningful discussions about EOL issues and palliative care. In addition, this approach fails to address those patients who do not desire or are ineligible for transplantation. Profiling patients with ESLD with whom discussions about treatment preferences or end-of life care is important would be clinically useful and an area for further research. This profile could include anyone with a CTP score of B or greater; a MELD score of 6 or greater; a complication from liver disease such as ascites, varices, or hepatic encephalopathy; 1 or more hospitalization in the last 6 months for a liver-related complication; severe muscle wasting and cachexia; decreased functional status; or increased dependence on others. Presence of any 1 of these prognostic indicators should be cause for discussions about EOL issues and assessment of unmet palliative care needs. Multiple criteria would increase the relevance and urgency for these discussions. Based on what we know from data in COPD, these discussions are less stressful when patients are feeling relatively well, and having these discussions early in the trajectory of disease will make it easier to return to these discussions at a later time if needed. Discussion of patient preferences for EOL in ESLD should be ongoing with patients and their family/caregiver, provide current updates and information, and include wishes for CPR, intubation with mechanical ventilation, invasive medical procedures such as endoscopy, and whether hospitalization for unstable illness is desired. It should also include discussions of how long the patient might live, what the trajectory might be like, and what dying might be like. The health care providers should also validate a person's wishes for through written orders and advance directives that are accessible to health care providers in all settings (Table).
Primary palliative care should be provided by all clinicians who care for patients with ESLD and represents incorporating the principles of palliative care into routine care. Referral to a palliative care specialist or palliative care team should be considered when primary palliative care is not able to control symptoms and adequately address quality of life and distress for patients or their families.