Chronic Obstructive Pulmonary Disease (COPD) is one of the leading causes of death in the United States, and the mortality is rising despite new modalities of treatment. The rise is related to the increasing number of women smokers, as well as people who have smoked in the past and are now coming to an age where their disease process is more symptomatic.
Patients may suffer from varying degrees of respiratory distress for years before their ultimate demise. In addition, COPD is frequently a co-morbidity (two or more co-existing medical conditions or disease processes) and can be more symptomatic than the primary diagnosis.
Palliation (to relieve or lessen without curing) of symptoms needs a specialized focus and is often not adequately managed due to the patient’s varied medical care. The result is frequent hospitalizations and visits to the emergency room. COPD patients frequently end up on a ventilator with the expectation they will return to normal daily activities. This is in contrast with the literature which indicates that every visit to the emergency room or ICU and every intubation/ventilator care worsen a patient’s prognosis.
Why isn’t there more help available? There is…
What is Palliative Care?
With the help of medications and other interventions offered by a specialized group of trained personnel, it is now possible to alleviate symptoms, improve quality of life and decrease hospitalizations through palliative care. Palliative care extends the principles of hospice care to a broader population of patients who are not ready for hospice or do not choose it but could benefit from disease management earlier in their illness. Considering the physical and emotional toll symptoms can take, palliative care aims to ease pain, insomnia and shortness of breath, as well as anxiety, depression and other intense emotions.
Palliative care works with curative care, including aggressive treatment or hospitalization if the patient or the family desires. A number of hospice organizations offer palliative care as part of their comfort care. At Hospice of the Western Reserve, we have developed a palliative care team that focuses specifically on the care for patients with COPD.
Our palliative care team members collaborate with patients, families, caregivers, referral sources and other healthcare professionals to provide holistic support for patients They offer support and direction for patients and families interested in advance care planning and ethical wills.
The palliative care team visits patients wherever they call “home.” This could be a nursing home, assisted living, group home or any other dwelling in our community.
How Palliative Care Works
The palliative care team visits COPD patients wherever they live—whether in an assisted living facility, group home or nursing home. The team has visited patients in prisons and homeless shelters as well. Anyone can receive the supportive services of palliative care.
Palliative care services include:
- An Advanced Practice Nurse (APN) collaborates with health care workers and use evidence-based symptom control. The APN will also work as a liaison with other specialists (hospitals/community) and provide education for families and caregivers.
- Assistance with advance health care decision making.
- Emotional, psychosocial, and spiritual support to the patient and families.
- Volunteer support, grief counseling, and expressive therapies such as art, music, and legacy work.
Every day, hundreds of people benefit from palliative care. Here’s the story of Mr. J., a COPD patient since 1996 who had been making several trips to the emergency room each year…
Mr. J. was first diagnosed with COPD in 1996. At the time, a doctor said he was “worried” about his lungs but Mr. J. did not receive specific information about his condition. Up to that point, Mr. J. had never heard of emphysema or COPD. Over the last two years, his doctors have not felt it was beneficial to continue to test his lung function as it had obviously continued to decline.
In the last 16 months, Mr. J. had been in the emergency room approximately eight times. He was frequently treated with acute measures to improve his shortness of breath. Mr. J. lives about 25 miles from his preferred hospital and this causes a conflict when a crisis occurs. The ambulance drivers are mandated to transport unstable patients to the closest emergency room that can provide treatment. Mr. J. wants to go where the doctors know him, have his records, and treat him with the most effectively.
Through our Palliative Care Program, Hospice of the Western Reserve partnered with Mr. J. and his doctors to manage his pain and other symptoms. By doing so Mr. J was able to recognize and report early symptoms and avoid a crisis and trip to the emergency room.
When should a person with COPD call for Palliative Care?
Any or all of the criteria may be considered.
- Significant dyspnea and respiratory distress – measured by effect on function (at rest, talking, eating walking etc.) or by other scales available
- Low body weight and frailty
- Poor oral intake for calories or fluids
- Limited activity level due to dyspnea or decreased endurance
- Decreased mental status, depression or episodes of confusion
- Onset of edema
- Age over 70 (male or female)
- Two or more co-morbid conditions (e.g. Congestive Heart Failure (CHF,) Cancer etc.)
- Two or more hospitalizations or visits to the emergency room due to exacerbation of COPD in the past year
- Ventilator support and intubation in the past year
- Patients with persistent hypoxemia and need for continuous oxygen
- Patients with persistent respiratory acidosis (pH <7.30)
- Bed bound status
- FEV1 <30% predicted
- Patients on multiple medications
Palliative Care Goals
With the palliative care program, our goal is to compliment the care the patient currently receives, prevent unnecessary hospitalizations, develop communication, and improve the patient’s quality of life. We treat patients and caregivers with respect and dignity at all times, and are always available to answer any questions.
About Hospice of the Western Reserve
Hospice of the Western Reserve is a community-based, non-profit agency providing comfort and emotional support to patients and their families. We care for people in a variety of settings including the home, hospital, long-term care facility, at David Simpson Hospice House overlooking Lake Erie, or at our inpatient Hospice Care Center in Olmsted Township, and soon at Ames Family Hospice House in Westlake. For more information, visit hospicewr.org or call 800.707.8922.