This week, I am honored to host a guest post by Paula Spencer Scott, the Senior Editor at Caring.com, the leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Paula is a 2011 MetLife Foundation Journalists in Aging fellow and writes extensively about health, caregiving, and hospices.
Hospice care is an underused
resource that can make a loved one's waning days more comfortable and less
stressful. Unfortunately, misconceptions about hospice abound. As a result,
many families avoid it or wind up having less-than-ideal experiences.
Frank conversations about
hospice care are useful, whether you're wary about choosing hospice in the first
place or you've decided to put a hospice plan in place.
The following three myths
come up again and again, hospice providers say. If they strike a chord with
you, use them as starting points to clarify what to expect from the experience.
Myth: Hospice is only for
the tail end of life.
When to start hospice? Usually, "earlier than you think," palliative
care experts say. Sometimes families, or even doctors, are reluctant to bring
up the subject for fear they'll be thought of as "giving up." As a
result, their loved ones spend only a few days in hospice care, although it's
designed to provide a peaceful end-of-life transition for weeks or months.
The general rule of thumb
for admittance to hospice is that a patient is diagnosed with a condition that
generally will result in six months or less of life. But nobody has a crystal
ball -- and nobody gets kicked out of hospice because they're still alive six
months and a day later. Many patients check in and out of hospice programs.
Ask your care provider: What comfort care options your
loved one has at the same time you're discussing treatment options, especially
if he or she wishes to have a noninvasive death experience at home. It's also
possible to pursue both comfort care and curative care at the same time, so ask
Myth: Hospice can't know
what my loved one needs as well as his or her doctor.
Hospice focuses on providing comfort and support, rather than curing an
illness. It's a form of specialty care, although the patient's doctor can
remain in the loop about care management. Regular medical treatment is not
usually front and center, however, because the focus is shifting to allowing
the person to live with as much privacy and dignity, and as little pain, as
Hospice services differ by individual
need and preferences but may include basic care management (such as chores,
meals, personal care), counseling, physical or occupational therapy, caregiver
respite, spiritual care, and bereavement support. There's some evidence that
people at the end of life live slightly longer when enrolled in hospice than
they would if not, possibly because there's less stress from futile invasive
Ask your care provider: What kind of services he or she
recommends, how your loved one's primary doctor plans to interface with the
case, how communication will flow between hospice and the medical practice, or
whether a hospice doctor will now manage care.
Myth: The medication will
"dope up" my loved one.
Pain medication given as part of palliative care is meant to ease suffering --
not to hasten your love one's decline and demise. Dosages are carefully
calibrated to manage pain, which makes it easier for your loved one to talk,
rest, or spend time with family and friends. Uncontrolled pain is a common reason
for poor quality of life at the end of life.
What's more, pain management
is only one part of the full picture of comfort care. Your loved one can
receive talk therapy, spiritual counseling, and physical support (even things
as basic as help avoiding painful bedsores) that help him or her feel better
than he or she might otherwise.
Ask your care provider: What the pain medication is for,
how to use it, how to know when it's necessary, and what signs of pain and
discomfort to watch for.
For more information about caregiving and hospice, visit Caring.com. Thanks to Paula for joining us at The Doctor is Listening!