Mrs. G., a woman in her 50s, had been receiving disease-directed care for her breast cancer, but her condition reached a point where the treatment was not only failing to have the desired effect, but was also greatly limiting her quality of life. The cancer had metastasized into her liver, brain and other vital organs, and the chemotherapy was taking a heavy toll. She wasn't eating, had severe pain issues as well as constipation, and couldn't easily get out of bed.
Mrs. G. lived alone, but her parents were staying with her and acting as caregivers. As her disease progressed, they struggled to understand the variety of treatment options available and were also unclear about the difference between palliative care and hospice care. Both patient and family were feeling confused and defeated when they first met with Francesca Toone, a clinical nurse specialist with the Visiting Nurse Service of New York's Hospice and Palliative Care Program, where I work. Francesca immediately let them know that she was there to help answer one overriding question: What did Mrs. G. really want?
At the initial palliative care consultation, Francesca spoke with Mrs. G. and her parents about advanced care planning, setting up a health proxy, what they could do to manage her pain and improve her quality of life, and whether the medications she was on were doing more harm than good. She also helped Mrs. G. complete an advanced care directive and encouraged her to relay that information to the rest of her care team and doctors. "This wasn't a conversation about stopping all curative care," Francesca explains. Rather, it was a conversation about what was best for Mrs. G., explaining all available options that honored her wishes, which included combining palliative care with her disease-directed care.
Ultimately, Mrs. G. and her parents decided not to continue aggressive chemotherapy, but to focus on symptom management so that quality of life would be the best possible. This decision brought a great sense of relief for everyone. "It was something everyone in the room knew they should do, but no one wanted to broach the subject. It's hard to stop curative treatment," says Francesca. Now that she has switched to palliative care, Mrs. G.'s pain is in control, her constipation is relieved, and she is able to move around more easily. She continues to work with a physical therapist and other clinicians to function as best she can.
What Palliative Care Is -- and Isn't
As director of the largest Hospice provider in Metropolitan New York City, one of my goals is to help the public understand what palliative care is, and to clear up any misconceptions people might have. As you can see from Mrs. G.'s story, palliative care is not focused on death or dying as many assume. Instead, it involves providing comfort and relief as a companion to curative care, offering options to patients and their families, improving quality of life, and respecting choices.
Hospice cares for terminally-ill people whose life expectancy is assessed to be less than six months. Palliative care is for seriously ill individuals who may or may not be terminally ill. In general, palliative care is appropriate for people who have serious progressive illness or are dealing with a condition whose symptoms are very difficult to manage. Patients with conditions such as cancer, advanced cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease, (COPD) liver diseases, kidney diseases, ALS, neurological diseases (e.g., dementia), and HIV/AIDs may benefit from palliative care. Frequent hospitalizations and functional decline, especially with several diseases, are key indicators that someone would benefit from palliative care.
Medically speaking, palliative care aims to relieve pain and other symptoms such as shortness of breath, nausea, lack of appetite and fatigue in patients with serious medical conditions. Serious medical conditions can be treated while receiving palliative care. However, when the goal is to optimize quality of life and to make comfort a priority, more invasive treatments -- such as chemotherapy in Mrs. G.'s case -- may be reduced or discontinued according to a patient's preference if treatments are no longer effective. Palliative care (usually in inpatient settings) is provided by an interdisciplinary team of physicians, nurses, social workers. At our agency, palliative care services in the home and community setting are provided by nurse practitioners, registered nurses, social workers and other disciplines as needed. The palliative care team can refer patients to Hospice care as the disease progresses and life expectancy shortens.
When to Talk to Your Doctor about Palliative Care
If you think you or a loved one might benefit from palliative care, raise the issue with your doctor right away. Patients and families can benefit from an extra layer of support to manage complex medical illnesses and decisions, and many wish they had heard about it sooner. It's also important to realize that the goal of palliative care is to help patients reach milestones of both quality and quantity of life. A 2010 study published in the New England Journal of Medicine suggested early palliative care intervention not only helped improve quality of life but also extended the lives of patients while they received less disease-targeted treatment.
When helping families understand and coordinate end-of-life care, my staff and I often start by explaining that "all hospice care is palliative care, but not all palliative care is hospice care." Many excellent resources are available to help guide this journey -- it is important to listen and try to help people understand that choosing how you want to live is a process that continues throughout life. Choosing palliative or hospice care is about living the best possible life -- it's not at all about giving up.
For more information, please visit the links below or give your doctor a call.