Provision of Palliative and Hospice Care Based on Need Urged for Patients with Chronic Lung Disease
Invoking what they call “twin” principles of ethics, the authors of an article in the Annals of the American Thoracic Society1 argue for earlier and more equitable provision of palliative care for patients with chronic lung disease, based on findings that their palliative care needs are met less frequently compared to patients with other serious illnesses.
“Patients with chronic lung diseases suffer higher symptom burden, lower quality of life, and greater social isolation compared with patients with other illnesses, such as cancer,” they write. The goal of palliative care, which includes hospice care for patients with an advanced, incurable disease, is to improve quality of life by addressing the physical and psychospiritual needs of patients and their families.
The twin principles:
- The ethical principle of sufficiency (meeting needs and providing competent care)
- The formal principle of justice (treating similar cases similarly, and thus addressing the issue of healthcare disparities)
“A principle of sufficiency requires that palliative care not be based on prognosis or life expectancy, but on need,” write the authors. “We urge that patients with similar palliative care needs merit similar treatment, regardless of diagnosis.”
Studies show that most patients with advanced chronic lung disease desire to engage in discussion about end-of-life care and “report feeling frustrated by poor communication and discussion surrounding advance care planning (ACP), and often feel that important therapeutic and symptomatic goals are not discussed,” according to the authors.
Other studies testify to this inadequate level of communication. One noted that fewer than one-third of caregiver and patient respondents with chronic obstructive pulmonary disease (COPD) had even heard of palliative care. Only a minority of patients with chronic lung disease receive formal palliative care referrals, and many are only referred after ICU admission or prior to hospice initiation, says another study.2
ACP happens rarely in advanced lung disease, with only about 20% of patients engaging in these conversations on average and almost 30% of these discussions occurring in the last three days of life.3
Addressing barriers to provision of palliative and hospice care
- Uncertainty in prognosis. The difficulty in predicting survival time in patients with lung disease presents a barrier not only to timely referral to hospice but also to the provision of integrated palliative care. “Medical need, not diagnosis, should be the guiding principle that determines whether or not to offer palliative care,” they assert.
- Clinician lack of knowledge and expertise in conducting palliative care discussions. As medical schools increasingly include a focus on hospice and palliative care in their curricula and as training programs in communication skills become available, the authors are hopeful that a growing number of health professionals “will demonstrate increased understanding of the benefits of palliative care and possess the skills necessary to provide primary palliative care and appropriately refer patients…when needed.”
- Fear of diminishing the patient’s hope. “High-quality communication may offer more, not less, hope to patients by eliciting patient-centered goals and offering palliative therapies that meet those goals…,” state the authors. Such discussions might also help clinicians understand patients’ symptoms and how they impact quality of life.
The authors recommend using existing patient-centered care models for chronically ill patients to facilitate access to palliative care in patients with lung disease. “Automatically integrating palliative care for patients with chronic lung disease would also reduce the influence of bias and prognostic uncertainty,” they suggest.
Criteria used in existing guidelines for initiating palliative care in the inpatient setting could also serve as guidelines for assessing care needs in the outpatient setting, note the authors. Elements should include assessment of:
- Pain and other symptoms
- Social and spiritual needs
- Patient understanding of illness and treatment options
- Patient-centered goals of care
“Use of prompts, such as the ‘surprise question’ (‘Would you be surprised if the patient died within 12 months?’) may serve as effective reminders to clinicians to initiate palliative therapies and begin advance care planning,” they write.
When Hospice Is the Next Best Step: Eligibility Guidelines
Timely and appropriate identification of hospice-eligible patients increases the likelihood that they and their families will benefit from compassionate end-of-life care. By law, healthcare professionals must certify that patients meet guidelines to be eligible for a referral to a hospice provider.
When evaluating a patient's hospice eligibility, consider the following guidelines:
- The illness is terminal (a prognosis of ≤ 6 months) and the patient and/or family has selected palliative care
- The patient has a declining functional status indicated by one of the following:
- A Palliative Performance Scale (PPS) rating of ≤ 50%-60%
- Being mostly dependent in two or three of Six Activities of Daily Living (ADLs)
- The patient has a significant change in nutritional status, e.g., > 10% loss of body weight over last four to six months
- The patient has experienced an observable and documented deterioration in overall clinical condition in the past four to six months, as indicated by at least one of the following:
- ≥ 3 hospitalizations or ED visits
- Decrease in tolerance to physical activity
- Decrease in cognitive ability
- Other comorbid conditions
These guidelines are presented as a convenient tool and not as a replacement for a physician’s professional judgment. They serve to help physicians determine when their patients meet clinical guidelines for hospice eligibility.
This article was originally published in October 2020 and updated in December 2023.
1Brown, C.E., Jecker, N.S., & Curtis, J.R. (2016). Inadequate Palliative Care in Chronic Lung Disease: An Issue of Health Care Inequality. Annals of the American Thoracic Society, 13(3):311-316. DOI: 10.1513/AnnalsATS.201510-666PS
2 Cross, S. et al. (2020). Place of Death for Individuals With Chronic Lung Disease: Trends and Associated Factors from 2003 to 2017 in the United States. Chest, 158(2), 670-680.
3 Jabbarian, L., et al. (2018). Advance Care Planning for Patients with Chronic Respiratory Diseases: A Systematic Review of Preferences and Practices. Thorax, 73:222-230.