By Richard Castaldo, MD
In 1974, a pioneering surgical oncologist in Montreal named Dr. Balfour Mount coined the term “palliative care” to create a different connotation than “hospice care.”
Over the last four decades, the growth of this type of comfort care in the United States has paralleled that of hospice, which began in the same year in Connecticut. While most people are familiar with what hospice means, many others are not aware of what palliative care entails in delivering relief to patients on the late-stage illness spectrum.
The two types of care share a similar focus. However, admission to a palliative program is initiated earlier in the illness process, rather than just at end of life and patients can still receive chemotherapy or dialysis.
According to the Center to Advance Palliative Care, there are six million people in the United States with a serious illness who could benefit from palliative care. Based on that ratio, that translates to more than 15,000 people in the Buffalo Niagara Region who might be eligible.
For Western New Yorkers with serious, progressive illnesses, it can be challenging to navigate the health care system. The extensive paperwork and variety of medical decisions can make finding and securing the needed services a difficult time. When a chronic condition impacts quality of life for patients and families, contacting a palliative care provider enables them to receive the comprehensive care and support that fits their needs.
Chronic illnesses often lead to patients cycling in and out of the emergency room or hospital. Some examples of diseases for which palliative care proves especially effective include cancer, chronic obstructive pulmonary disease, congestive heart failure, dementia and neurological disorders, including ALS & MS.
Anyone can make a referral; it does not have to be a health care professional. When doctors refer patients to palliative care, they are not relinquishing their primary care of that patient; rather, they are receiving a supplemental team of experts that implements additional services and resources. They collaborate with primary care physicians and specialists to create a care plan to keep patients independent at home. They serve as an extra set of eyes and hands to lighten a practice’s workload and can give doctors alerts for any condition changes.
When patients enroll in palliative care, which is often covered by health insurance, they receive case management to reduce discomfort and hospitalizations. The primary goal is to alleviate distress associated with advanced illnesses. A cross-functional team develops a care plan for the patient’s home or long-term care facilities to prevent trips to the emergency room or hospital admissions and mitigate symptoms such as: pain, shortness of breath, loss of appetite, constipation and emotional needs and spiritual concerns.
The services address mental, emotional, social and spiritual issues. A medical director performs consultations to review a patient’s stage in the disease process and medical needs. Registered nurses make monthly visits in the home or assisted living facility to assess what is troubling the patient while anticipating needs and ensuring appropriate medications are available. Patients also have access to a social worker who will assist them with accessing necessary resources, applying for Medicaid and obtaining personal care aide services and social or medical transportation. Social workers also help prepare advance directives while guiding families and connecting them to community resources, personal care aides and medical or social transportation.
Spiritual counselors can discuss one’s values and beliefs, the search for purpose and meaning, and how serious illness can make it difficult to find acceptance and peace. The ultimate goal is to adopt coping strategies to ease stress from the illness and its related symptoms.
Sorting through the landscape of health care organizations can be overwhelming for individuals to find the proper assistance they need.
Chronic illness educators spend extensive time counseling patients, answering questions and responding to concerns regarding the illness and its prognosis. They take pride in teaching patients and families about the disease process and treatment options. Another benefit is that staff can visit patients after they are discharged from the hospital to help avoid additional hospitalizations. Nurses help patients avoid exacerbating conditions related to the illness as part of a post-acute care model. Many programs now offer remote patient monitoring through telehealth kits that equip clinical staff with real-time monitoring and evaluation, enabling a rapid response whenever the situation demands it.
There are many organizations that oversee palliative and hospice care, enabling a streamlined approach for clinical staff to be cross-trained in patient evaluation and admissions for both programs. Many patients eventually are referred from palliative care to hospice in a continuum of care that emphasizes comfort and quality of life for everyone involved for as long as possible.
Whether a patient is discharged from a palliative program or continues to hospice care, the clinical team aims to meet the patient’s goals for comfort and dignity.
The medical directors, nurses and social workers always strive to alleviate any burden in the family through dedicated, specialized care and thorough guidance at every step of the illness.