Know When You Might Benefit from Palliative Care (Psst...It’s Not Hospice)
Itís a way to optimize the quality of life in your remaining years.
In the course of a disease, you may experience distressing symptoms, despite the best medical treatment. Or you learn that a procedure that might save your life has frightening risks. You may run out of treatment options and worry about what will happen next.
This is where a palliative care physician can help soothe the burdens associated with a chronic, life-threatening illness.
“We aim to improve quality of life by addressing pain—emotional and physical—and other symptoms, while assisting patients and their families in making complex medical decisions,” says Krista Dobbie, MD, a board-certified palliative care physician at Cleveland Clinic.
Benefits to Heart†Patients
Advanced heart failure is one reason some patients are referred to palliative care. These patients often experience distressing symptoms that increase in number and severity as the condition progresses.
It is not uncommon for patients with advanced heart failure to lose their appetite or develop pain. Some get depressed because they don’t feel well. Others may develop debilitating shortness of breath. A palliative care physician helps manage symptoms like these using drugs for pain, depression, anxiety, constipation and other problems, as needed.
Unlike hospice care, palliative care can be offered in conjunction with life-prolonging care. A study in the July 2017 Journal of the American College of Cardiology found that adding palliative care to usual medical care improved quality of life, alleviated depression and anxiety and improved a sense of spiritual well-being.
New Therapies, New Dangers
While exciting medical advances save thousands of heart-failure patients every year, some have inherent risks:
Intravenous inotropes help the hearts of select patients pump better, improving their breathing. However, they have potentially serious side effects that should be discussed before being started.
Ventricular assist devices (VADs) can take over the heart’s pumping function, but increase the risk of stroke and infection.
Heart transplantation is the only cure for heart failure, but it requires lifelong immunosuppression. Due to a shortage of donors, only a small percentage of patients receive the new heart they need.
Palliative care physicians help patients understand the benefits and risks of each treatment, so they can make an informed decision. “We do not push an agenda or sell a therapy. Our job is to be neutral,” Dr. Dobbie explains. “We help patients think through their medical treatment goals, then work with their cardiologist to tailor a treatment plan that will meet those goals.”
Asking the Hard Questions
The intimate nature of these discussions is easier when a patient-physician relationship has been established. That’s why palliative care physicians like to become involved early.
“We ask questions like, what if your medications do not improve your heart failure? If your treatment causes a stroke, at what point would your quality of life not be acceptable? How would you feel if you don’t get the heart you are waiting for? It is better to discuss these issues before a patient’s disease worsens or becomes too burdensome,” says Dr. Dobbie.
Transitioning to End-of-Life Care
After months or years of fighting heart failure, some patients grow weary of the battle. Sometimes, they run out of treatment options.
“They want to know what will happen next. They ask me if they can be kept comfortable,” says Dr. Dobbie.
When a heart failure patient decides not to pursue additional treatment, the palliative care physician will approach the subject of hospice and help the patient articulate their views on end-of-life care.
Although most patients prefer to die at home, there are exceptions.
“We take into account the patient’s wishes, discuss how we can make them a reality and put hospice services in place to ensure they are met,” she says.
One Woman’s Experience with Palliative Care. “It gave me back my life,” she says.
Debbra Alabaugh has diabetes, hypertension, kidney disease, sleep apnea and an inoperable hernia in her chest and abdomen that pushes on her heart and lungs, making it hard to breathe.
Thanks to palliative care, however, she lives a busy life at home, where she enjoys the company of her family and card-playing friends. “Palliative care was a miracle for me,” she says.
One Problem Followed Another
At age 65, Debbra is grateful to be alive. After suffering from shortness of breath for many years, she was diagnosed with valve disease and underwent three valve replacements. Her life was moving along nicely when a routine checkup revealed that bacteria had settled on two of the valves, causing a potentially deadly infection known as endocarditis.
In October 2015, she underwent surgery again to scrape the valves clean. Although the procedure left her with a healthier heart, four incisions had created a large ventral hernia where the tissues had weakened from multiple incisions. Her organs had become entrapped in the hernia, requiring half her stomach and small intestine to be removed. A fifth operation would be needed to correct the hernia, but her surgeon felt she was too fragile to survive it.
Debbra returned home, only to experience a host of symptoms that worsened as the hernia grew. She had extreme anxiety in the evenings. “I feared that if I went to sleep, I would not wake up,” she recalls. She felt nauseated after eating, was constipated, had unrelenting pain and shortness of breath and was depressed. “Life got pretty bad,” she says.
Accepting Palliative Care
Debbra’s Cleveland Clinic cardiologist, Maria Mountis, DO, encouraged her to meet with Krista Dobbie, MD, to discuss palliative care. Debbra refused.
“I thought palliative care was hospice,” she says.
Dr. Mountis told Debbra that her shortness of breath and edema would never go away, and explained that palliative care is meant for people with chronic symptoms like hers.
A few months later, when her symptoms finally became unbearable, Debbra relented. The decision to pursue palliative care turned her life around.
“Dr. Dobbie gave me medications for anxiety, depression and pain. Suddenly, I was able to go upstairs and remove my oxygen long enough to get undressed without fearing I was going to suffocate,” she says. “I no longer have nausea and am not depressed or anxious. I am happy now.”
For Now and For the Future
Debbra’s hernia has reached the size of a football and continues to grow. She knows it will eventually kill her. She and Dr. Dobbie have talked about the future, and she is at peace knowing what will be done to ensure she remains comfortable and free of pain.
Meanwhile, with the help of palliative care, Debbra has a life to live.
“All that’s down the road. In the meantime, I want to enjoy every minute I have with my friends and family,” she says.