The past few years have seen a dramatic shift in the underlying causes of advanced lung disease. Long-term exposure to tobacco from smoking, as well as occupational exposure, similar to what some veterans experience by 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 problems with lung function, as well as future chronic diseases. The dramatic increase in the number of people who they smoke marijuana it will also create a new group of people who are likely to develop emphysema in the future. Overall, these factors point to a growing population of patients requiring specialized pulmonary care in the coming years.
In patients with lung diseases (including COPD, chronic asthma, emphysema, pulmonary fibrosis, bronchiectasis, cystic fibrosis, chronic bronchitis, etc.), shortness of breath can negatively affect quality of life and lead to feelings of fear and isolation.
However, hospice can play a critical role in providing care and improving the quality of life of those with lung disease. By helping to manage physical symptoms and emotional distress, hospice allows patients to maintain their dignity and be 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 difficulty breathing, reduce readmissions, and provide 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 play an important role in educating patients about hospice and their transition to hospice care. Here’s what to keep in mind when caring for patients with advanced lung disease.
Understanding hospice referrals
There is a growing misconception among many patients, loved ones and even healthcare professionals that hospice care is only useful in the last days or weeks of a patient’s life. This is simply not right – patients qualify for hospice when they have a prognosis of six months or less, and hospice care can offer comfort and support during those final months.
Only a doctor 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 condition is deteriorating, 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 eligibility for hospice: one related to the severity of the illness and the other to the continued progression of the illness.
The severity of the disease is evidenced by shortness of breath (also known as dyspnea) at rest or with minimal exertion and on oxygen therapy. The patient may also have involuntary weight loss and need more help while performing daily tasks such as going to the toilet or bathing.
Disease progression often occurs when disease-modifying treatments are no longer effective. When this happens, we typically see increased health care utilization, such as hospitalizations or emergency room visits. Patients often seek help for respiratory problems, acute breathing problems and/or lung infections, such as bronchitis or pneumonia. Patients often say they no longer want to be hospitalized or in the intensive care unit.
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 disease. Physicians should also ask three key questions when determining when to refer a patient with advanced lung disease to hospice:
- Are 50% or more of the patient’s waking hours spent sitting/lying/resting?
- Does the patient exhibit symptoms, including coughing, wheezing, or shortness of breath, with minimal exertion or at rest?
- Does the patient need help with three or more major activities of daily living (bathing, dressing, holding, walking, transferring, or eating)?
If the answer to these questions is yes, the patient is experiencing functional decline and it may be time for the clinician to consider referring the patient to hospice.
What the hospice offers for patients with lung diseases
People with lung disease often have one main concern – “What if I can’t breathe?”
When a patient is enrolled in hospice, the team creates an individualized care plan that outlines 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 assesses the patient’s condition and updates the care plan as symptoms and conditions change, even daily. The hospice team is available 24/7 to support patients in the event of respiratory distress.
The team manager ensures that information flows between the patient’s doctor, nurse, social worker, hospice aide, chaplain, volunteer, and grief specialist. The team leader also helps ensure that the patient’s wishes and desires are taken into account. In addition, the hospice coordinates and supplies all medications, medical supplies and medical equipment related to the lung condition to ensure that patients have everything they need. Equipment often includes oxygen, aspirator, nebulizer, hospital bed, bedside table, tray table, wheelchair, and more.
Hospice will usually include standard treatments, such as pulse steroids, increased oxygen, and antibiotics to help when symptoms worsen from an exacerbation. Additionally, on a case-by-case basis, hospice can support high-flow oxygen, BiPAP, Airvo, or Trilogy.
Initiating advance care planning conversations
One important way health care professionals can ensure timely referral of patients with advanced lung disease to hospice is to initiate advance care planning conversations well in advance of noticeable deterioration in health.
According to a 2017 Kaiser Family Foundation Survey, nearly 70% of Americans would prefer to die at home if given the choice. However, more than 56% of patients with advanced lung disease or chronic obstructive pulmonary disease still die in hospitals, nursing homes or long-term care facilities. Sometimes these patients experience intrusive interventions that they do not want, including intubation, CPR, or mechanical ventilation. These numbers underscore the importance of advance care planning to ensure that patients’ wishes for medical care are documented and honored—while supporting industry efforts to provide high-quality, cost-effective care.
Timely discussions about care priorities enable the patient to document their wishes in living wills and other advance directives, allowing them to receive the care they want at the right 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 in a patient’s diagnosis is not an indication that things will to deteriorate. Rather, it is a responsible way to prepare patients, families, and the team that cares for them if the need arises.