Over the last several years, there has been a dramatic shift in underlying causes of advanced lung disease. Prolonged tobacco exposure from smoking, as well as occupational exposure, like what some veterans experience from spending time in war zones, are some of the factors. However, there are also new and evolving factors: the Covid-19 pandemic, for example, has left many people suffering from or vulnerable to more acute and persistent lung function issues, as well as future chronic conditions. The dramatic increase in the number of people who smoke marijuana will also create a new group of individuals likely to develop emphysema in the future. Overall, these factors point to a growing patient population in need of specialized pulmonary care in the years ahead.
For patients with pulmonary conditions (including COPD, chronic asthma, emphysema, pulmonary fibrosis, bronchiectasis, cystic fibrosis, chronic bronchitis, etc.), shortness of breath can negatively impact quality of life and lead to feelings of fear and isolation.
However, hospice can play a critical role in providing care and improving quality of life for those with lung disease. By helping to manage physical symptoms and emotional distress, hospice allows patients to retain their dignity and remain as comfortable as possible. Hospice clinicians are trained to provide personalized attention, such as helping patients with lung disease overcome feelings of panic that come with struggling to breathe, reducing rehospitalizations and offering peace of mind.
Patients can only enjoy the benefits hospice can provide if they know about them and understand how to access them. Healthcare professionals are instrumental in educating patients about hospice and transitioning them to hospice care. Here is what they should keep in mind when caring for patients with advanced lung disease.
Understanding hospice referrals
There’s a lingering misperception among many patients, loved ones, and even healthcare professionals that hospice care is useful only in a patient’s last days or weeks of life. That’s just not correct – patients qualify for hospice when they have a prognosis of six months or less, and hospice care can offer comfort and support throughout those final months.
Only a physician can make a clinical determination of life expectancy. However, when a patient with lung disease becomes increasingly concerned about their ability to breathe and their declining condition, both the patient and family are likely to benefit from hospice services.
In most cases, there are two key characteristics that must be met to determine hospice eligibility: one is related to disease severity, and the other to ongoing disease progression.
Disease severity is evidenced by shortness of breath (also known as dyspnea) while at rest or with minimal exertion and on oxygen therapy. A patient may also have unintentional weight loss and need more assistance while performing daily tasks, such as going to the bathroom or bathing.
Disease progression often presents itself when disease modifying treatments are no longer effective. When that happens, we typically see increased healthcare utilization, such as hospitalizations or emergency room visits. Patients often seek help for respiratory issues, exacerbated breathing problems and/or lung infections, like bronchitis or pneumonia. Patients often say they no longer want to be hospitalized or in the ICU.
Remembering that patients are eligible for hospice at “six months or less” can help prevent delays in care and unnecessary suffering for patients with advanced lung diseases. Physicians should also ask three key questions when determining when to refer a patient with advance lung disease to hospice:
- Is 50% or more of a patient’s waking hours spent sitting/lying down/resting?
- Does the patient exhibit symptoms, including cough, wheezing or shortness of breath, with minimal exertion or at rest?
- Does the patient require assistance with three or more basic activities of daily living (bathing, dressing, continence, ambulation, transfer or feeding)?
If these questions are answered in the affirmative, the patient is experiencing functional decline, and it may be time for the clinician to consider referring the patient to hospice.
What hospice provides for patients with lung disease
People with lung disease often have one primary concern – “What will happen if I can’t breathe?”
When a patient enrolls in hospice, the team creates an individual plan of care that details specific interventions for respiratory distress. The plan is developed with the advice and consent of the patient’s pulmonologist, respiratory therapist and hospice physician. This pre-emergency plan is designed to bring severe symptoms under control at home while giving patients and families a sense of security.
The hospice team evaluates the patient’s status and updates the plan of care as symptoms and conditions change, even on a day-to-day basis. The hospice team is available around-the-clock to support patients when respiratory distress occurs.
A team manager ensures that information flows between the patient’s physician, nurse, social worker, hospice aide, chaplain, volunteer and grief specialist. The team manager also helps ensure that a patient’s wishes and desires are honored. In addition, hospice coordinates and supplies all medications, medical supplies and medical equipment related to the pulmonary condition to ensure patients have everything they need. Equipment often includes oxygen, suction, nebulizer, a hospital bed, bedside commode, tray table, wheelchair and others.
Hospice will commonly incorporate standard treatments, such as pulse steroids, increased oxygen and antibiotics, to help when symptoms worsen from disease exacerbation. Also, on a case-by-case basis, hospice may support high-flow oxygen, BiPAP, Airvo or Trilogy.
Initiating advance care planning conversations
One important way healthcare professionals can ensure patients with advanced lung disease are referred to hospice in a timely manner is to initiate advance care planning conversations well before a noticeable decline in health.
According to a 2017 Kaiser Family Foundation survey, nearly 70% of Americans would prefer to die at home, if given a choice. However, more than 56% of patients with advanced lung disease or chronic obstructive pulmonary disease are still dying in hospitals, nursing homes or long-term care facilities. Sometimes, these patients experience intrusive interventions they do not want, including intubation, CPR or mechanical ventilation. These figures highlight the importance of advance care planning in ensuring that patients’ wishes for medical care are documented and adhered to – while supporting industry efforts to provide high-quality, cost-effective care.
Timely discussions about care priorities empower the patient to document their wishes in living wills and other advance directives, allowing them to receive the care they want at the appropriate time. This documentation provides clarity and prevents delays in care. Ultimately, it supports longer hospice stays and fewer hospitalizations, ICU stays and intubations.
Having advance care planning conversations early on in a patient’s diagnosis is not an indication that things will get worse. Rather, it’s a responsible way to prepare patients, families and the care team if the need arises.