Those of us who specialize in hospice and palliative medicine know the patients whose data is highlighted in two studies on advanced lung disease at end of life.
They are patients with advanced lung disease who are aware of their own declining health and new or worsening symptoms. They are patients who are not improving on current treatments and, if asked, say they would prefer to be at home for comfort-focused hospice care.
Nearly 70% of Americans in a 2017 Kaiser Family Foundation survey, in fact, indicated they would prefer to die at home, if given a choice.
Yet more than 56 percent of patients with advanced lung disease or chronic obstructive pulmonary disease (COPD) are still dying in hospitals, nursing homes or long-term care facilities, sometimes after undergoing interventions they do not want, including intubation, CPR or mechanical ventilation.
“Primary care physicians and specialists should understand that decline from COPD is usually apparent in the final 6-12 months of life.”Eric Shaban, MD
Moreover, they are not being referred to hospice care in a timely manner because their physicians or specialists are not having honest conversations with them about their goals for end-of-life care, nor are their healthcare professionals recognizing the signs of decline that make seriously ill patients eligible for the hospice care that they prefer.
Even those with COPD who are referred to palliative care are older (75+ years), experience longer hospitalizations (4.9 vs. 3.5 days) and are far more likely to die in the hospital (32% vs. 1.5%).
While it’s true that advanced lung disease is far more variable and unpredictable from patient to patient compared to cancer, primary care physicians and specialists should understand that decline from COPD is usually apparent in the final 6-12 months of life, marked by:
- increasing symptom burden, despite maximal or close-to-maximal therapies
- presence of comorbid conditions or diagnoses
- ongoing functional decline, marked by decreased ambulation, inability to climb stairs or daily confinement to just a few rooms, a bed or a chair
- more frequent hospitalizations or use of healthcare services and increased difficulty making it to doctor or clinic appointments
- increased caregiver burden, marked by family members who help more and more with activities of daily living, medications, household chores
Physicians should ask key questions when determining when to refer a COPD patient to hospice:
- What percentage of a patient’s waking hours are spent sitting/lying down/resting? An answer of 50% or more is a sign of functional decline and likely eligibility for hospice referral.
- Does the patient exhibit symptoms, including cough, wheezing or shortness of breath, with minimal exertion or at rest? If yes, hospice care should be considered.
- Does the patient require assistance with three or more basic activities of daily living (bathing, dressing, ambulation, transfer, continence or feeding)? If yes, hospice care should be considered.
Physicians should also embrace the value of goals-of-care conversations and advance care planning with their seriously ill patients, not only to honor their patients’ wishes for medical care but also to support industry efforts to provide high-quality, cost-effective care.
A sign of progress comes from the healthcare industry’s efforts to expand palliative care and incorporate ACP into newly evolving payment models, putting hospice care on equal footing with other medical specialties and activities. Doing so will provide two benefits:
- It will give patients with advanced lung disease the comfort-focused and hospice solutions they deserve in the place they prefer to be: home.
- It will give physicians much-needed incentives to embrace the importance of goals-of-care conversations and follow through on them.