Recently, doctors advised Tony Cacciotti, husband of 79-year-old TV star Valerie Harper, to engage hospice services for his wife. Harper, the "Mary Tyler Moore Show” star who played Rhoda Morgenstern, was reportedly first diagnosed with cancer in 2009.
Citing the couple’s 40 years of shared commitment, Cacciotti announced that he would not follow her doctors’ advice to “put Val in hospice care.” Instead, he will work to make his wife “as comfortable as possible.”
As a hospice and palliative care doctor, I wonder if, like many people – including some of my family, friends, and even medical colleagues –Cacciotti fully understands what hospice services actually are and what hospice clinicians can do for patients like Harper with a life-limiting illnesses.
One common misunderstanding is that our focus is on dying. In fact, we help patients and families to live as well as possible for as long as possible, and multiple studies have shown that receiving hospice care earlier on in the disease process can actually extend life.
We also enhance the quality of life by helping people to make the most of each day. We recommend and use medications judiciously and at the lowest doses possible to provide the recommended benefit, and to minimize any side effects.
A second misunderstanding is that engaging hospice care signals that a family or caregiver is “giving up” or somehow reneging on their duty or promise to care for a loved one at home.
We come to our patients’ homes—or a friend’s home, or a nursing home or wherever someone happens to live. As hospice physicians, we work with the patient, families and our patients’ current doctors to develop a customized care plan. Typically, the hospice team includes a nurse, a home health aide, a social worker, chaplain and a physician. Together, we manage all aspects--medical, emotional, psychosocial and spiritual—of the patient’s care and quality of life, while also supporting the whole family.
Relieved of the logistics and regimens of caretaking, many hospice families discover that they can resume family life and spend more fun or quality time with their loved one.
For patients whose symptoms cannot be managed at home, we provide two hospital-level hospice houses (Danvers and Lincoln) for short-term symptom management, with the goal of getting patients home again once their symptoms are controlled.
The third myth or misunderstanding is that hospice is a next and final step that only a doctor can recommend. Often, a doctor will recommend hospice to his or her patients. But patients or families can also reach out to a local hospice agency to request an evaluation at any time. Equally, hospice patients can choose to sign off at any time—with the option to re-engage when or if their medical status changes.
And for those who have advancing disease but are not ready for hospice, palliative care can offer another layer of support.
Valerie Harper’s family recently established a GoFundMe account to help to pay for her medical care. However, Medicare and most health insurances cover hospice care, which also includes the cost of medical equipment and medications.
Here at Care Dimensions, we know that many of our patients and families are facing some difficult transitions and changes. As a 41-year-old non-profit hospice organization serving 95 Massachusetts communities, our primary job is to help to maximize comfort, dignity and quality of life.
But it’s also part of our mission to educate our neighbors and communities on what hospice care really is.
We provide many educational opportunities for organizations and communities across greater Boston. Want to learn more about advanced-illness or end-of-life care? Check the education and resources at our website.
Dr. Anna Chon is a full-time hospice and palliative care physician at Care Dimensions where she works with an interdisciplinary team to manage the care of hospice patients wherever they live.