Choosing Hospice and Palliative Care
Making the decision to choose palliative care or hospice care for you or someone you love will be one of the most difficult decisions ever made, but chances are, once the decision is made, you will wish you had made it sooner. Fewer things in the American healthcare system are more poorly understood than palliative care and hospice. These two sub-specialties of medicine are especially relevant for cancer patients, given the nature of the disease and its potentially harsh treatments.
Palliative care is a treatment approach meant to relieve suffering and improve the quality of life for any patient at any age dealing with a serious illness that is either curable, chronic, or terminal. It is a holistic approach that works to treat patients in every sphere of care – physical, emotional, mental, social, and spiritual. Patients receiving palliative care are also very likely receiving active treatment for their cancer, including chemotherapy, radiation, or surgical interventions. Specific to cancer, palliative care can be initiated soon after the time of diagnosis to help patients cope with and adjust to the side effects of difficult treatments.
Hospice is a type of palliative care that is specific to patients who have been determined to have a life expectancy of six months or less and whose treatment focus has moved from active treatment to comfort. Hospice care can be provided within an inpatient treatment center, but more often than not, hospice care is provided wherever the patient happens to be, – at home, within a care facility, or even within a hospital.
Both palliative and hospice care are provided by specific teams of providers that meet the needs of both the individual patient and any family or caregiver for that patient. The teams include doctors, nurses, social workers, pharmacists, volunteers, chaplains, and potentially other therapy providers like musicians, artists, or occupational and physical therapists. Rather than replace a patient’s care, palliative care and hospice teams are layered over already existing care teams, be they oncologists or primary care providers. The goal of both hospice and palliative care is to take a holistic approach to their patients, with an emphasis on pain management and symptom control.
One of the greatest obstacles to receiving palliative or hospice care is that patients are not referred to the care until weeks or often days before death. Patients, their families, and even their doctors are often reluctant to bring up the possibility of a needed palliative care or hospice referral. This troubling pattern exists for many reasons including a patient not knowing what their options are or not being able to accept when they have been exhausted, a family not wanting to lose their loved one, or a doctor or treatment team not wanting to initiate a change of care plan and upset their patient.
“It is not always easy to initiate a conversation with the patient or their family about the need for or benefit of palliative care or hospice, but when more physicians start doing it, the stigma of what palliative care or hospice means will wear off,” says Srilata Gundala, MD, the hematologist/oncologist who founded Hope & Healing Care Centers in Lombard and Hinsdale, Illinois. “I always want what is best for my patients, and sometimes, to ensure their comfort and well-being, what is best are the extra supports that palliative care or hospice can provide. These extra treatments, while not focused on curing the disease of cancer, help the patient experience their best quality of life, however long that life may be, even when shortened by cancer.”
As always, patients get the best care when they can advocate for themselves, or have an advocate working on their behalf. You can learn more about being an empowered cancer patient here. Patient advocates can also be a doctor, family member, or caregiver. Whomever the advocate may be, they should know the potential signs to look for that point to the need for a referral to palliative care or hospice:
Unexplained weight loss;
Increased sleep and decreased alertness;
Experiencing more falls;
Requiring more medications to treat greater pain;
Shortness of breath;
Finding that the activities of daily living (ADLs) like bathing, dressing, grooming, transferring in and out of beds, chairs, or care becomes more difficult; or
An increasing pattern of ER or hospital admissions.
While these signs on their own may not mean that a patient is near death or their cancer has progressed, they do mean that the patient is not able to experience their best quality of life. By focusing on the things that bring comfort and ensure a good quality of life, palliative care and hospice are tools that every cancer patient should know about.
Written By: Sheila Quirke, MSW
Reviewed By: Srilata Gundala, MD
