Discussions about end of life are some of the most difficult to hold with a patient and his or her family. Some clinicians report that they never become comfortable with the conversation. In fact, physicians receive little or no training in end of life discussions. However, educating the patient and family about palliative care and hospice at the right time can ease pain and suffering, and improve the weeks, months, or years the patient has remaining.
Introducing Palliative and Hospice Care to Patients
The most difficult part of introducing palliative care and hospice can be determining when the time is right. Cancer can sometimes have a clearer diagnostic path, making it a bit easier to determine when end of life services can be most helpful. However, other less well-defined diseases, and complications like dementia and Alzheimer’s, can leave clinicians struggling to determine when they should introduce palliative care and hospice. These factors can lead to practitioners waiting too long to recommend these services.
Experts in the palliative and hospice care space say that patients should be introduced to the service in the years and months leading up to end of life – not just in the final days. However, that is not what is happening. An article in Healthline reported that “While hospice is available (and reimbursed by Medicare) to individuals with six months or less to live, researchers found that for half of the study participants their duration of hospice care was less than 13 days.”
Medicare reports that only 23% of beneficiaries were in hospice at the time of their death and they had been there for only a little more than 12 days. In other words, more than three-quarters of the people who could benefit from end-of-life care and comfort are not receiving it in a formalized way.
So why aren’t those approaching end of life receiving the care they need? In most cases, it is a hesitancy to recommend on the part of clinicians, inability to diagnose exactly where an individual is in the continuum of life, and a lack of understanding about what hospice does.
Understanding Hospice and Palliative Care
According to the Center to Advance Palliative Care, the service is “focused on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.” Palliative care and hospice offer expert pain management, spiritual support, as well as social and physical activities, tailored to the individual. Their providers work closely with the person’s healthcare team, to “provide another layer of support”.
It’s important to look at the details of what palliative care teams provide patients and families. They deliver the care that providers often wish they could provide their patients, but are unable to outside the practice or hospital. Palliative care teams specialize in treating people suffering from the symptoms and stress of serious illnesses such as cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS) and many more. This type of care treats pain, depression, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping, anxiety and any other symptoms that may be causing distress. It is supportive care that also provides symptom management. Imagine how this care can ease the pain and suffering of patients and their families in the weeks and months leading up to death.
It’s also important to remember that palliative care can be offered in a health care setting. As cancer.gov says, “Patients may receive palliative care in the hospital, an outpatient clinic, a long-term care facility, or at home under the direction of a physician.”
Physicians and advanced level practitioners cannot extend their arms to the patients once they are outside the practice or the hospital, but palliative care and hospice can. They are care extenders at a time when it is needed most. They can care for the pain that medication cannot address and provide comfort that patients and families most urgently seek.
It may be difficult to determine when to bring in palliative care and hospice, but why not err on bringing them in too soon? A consultation with the experts in the local agency will help you determine what your patient needs, and to get comfort and support to them at the absolute earliest moment.