Maximizing Life

What hospice care is all about

The word hospice is sometimes spoken in hushed tones. It can conjure feelings of sadness, because by its very definition, it involves caring for someone who is terminally ill.

Hospice, however, also has the same word root as hospitality. And who doesn't like hospitality?

Because home typically is a safe haven, many people with life-limiting illnesses, given a choice, would rather be home than in a health-care facility. However, they often need special care.

"It embraces life. Many people view hospice as a death sentence, but on the contrary, hospice is really all about maximizing life," said Vicki Rate, an oncology nurse and president of Friends of Hospice, an auxiliary of the Hatfield-based North Penn Visiting Nurse Association.

This quote, from a Reporter Online article, describes the dark way hospice care is sometimes viewed, but also sheds light on the brighter side, the fact that the real goal is to make the end of life as comfortable and enjoyable as possible. Hospice care consists of entire teams devoted to every aspect of a patient's needs, from pain management to companionship and counseling, making it an ideal choice when compared to cold and intrusive hospital care.

Reasons to Choose Hospice Care

Hospice care has many advantages

Modern medicine works many miracles, but when it comes to the point where it can no longer slow or cure an illness, there are many reasons to seek hospice care. Recently, myOptumHealth.com put together a compelling list:

Reasons for choosing hospice

• Death with dignity. You are not hooked up to machines other than those that might ease pain or symptoms. You're less likely to undergo distressing tests and don't receive treatments that are no longer effective in curing your illness.
• Comfort. Pain management is a priority. Studies confirm that people in hospice are more likely to have pain controlled than those receiving end-of-life care in other settings.
• Quality of life. Hospice addresses emotional and spiritual needs. This helps the ill person come to terms with death and reduces the stress of dying.
• Remaining at home. Most people prefer to die in the privacy of their own homes, surrounded by loved ones and pets. Hospice enables the care team to come to you.
• Financial concerns. Hospice care typically costs less than hospital or nursing home care if you have a terminal illness. Plus, Medicare, Medicaid and private health insurers usually cover most or all of the costs.
• Caregiver support. Families who received hospice care reported a "favorable dying experience" more often than those whose loved one died in a hospital.
• • Hospice counsels families so they know what to expect as an illness advances.
  • Respite care is provided so family caregivers get a break.
  • Caregivers are relieved of paperwork. Hospice often helps coordinate claims and bills for the services provided.
  • Families receive bereavement support for a year after a loved one dies.
• Lack of home caregiver. People living on their own or with someone not up to the demands of caregiving can get compassionate end-of-life care at a hospice located in a hospital, nursing home or other facility.

Literally hundreds of studies, many of them referenced in the pages of this blog, have proven these statements to be true. As always, the decision is up to the individual, but with so many pros and very few cons, hospice is becoming a common choice.

Dartmouth Study Promotes Hospice

Hospice care gains more supporters following telling studies

A new study by the Dartmouth Atlas, a group that specializes in studying medical care, has determined that a full one third of U.S. patients dying of cancer end up pursuing costly and ineffective hospital care as opposed to seeking hospice care. A quote from the researchers, published on MSNBC.com:

"Patients often unnecessarily receive care in the ICU and invasive procedures," said Dr. John Goodman who coauthored the Dartmouth Atlas study of 235,821 patients with federal Medicare health insurance who died of cancer between 2003 and 2007.

"On average, patients ... would much prefer to receive care that allows them the highest quality of life in their last weeks and months and care that allows them whenever possible to be at home and with their families," Goodman told reporters in a telephone briefing.

Joining the list of professional organizations publicly supporting hospice care is The American Society of Clinical Oncology, whose mission is to create guidelines for cancer specialists, citing their belief that it serves to decrease pain and increase quality of life for both patients and their families.

Hospice Care Myths

There are several harmful myths that still persist regarding hospice care

While the public has more knowledge regarding hospice care these days than they ever have before, there are some common misconceptions that still exist. In a recent article for The News Leader, Hal Aslestad listed three of the most persistent, a quote:

I would like to address three myths about hospice care. Some think hospice care is only for the last few days of life. But did you know that hospice patients and families can receive care for six months or longer depending on the course of the illness?

Other individuals think that hospice care means giving up on all medical treatment. But hospice provides high-quality pain management and symptom control. Diseases which are not related to the primary hospice diagnosis can still be treated

Lastly, many think that hospice is only for cancer and AIDs patients. Did you know that today, while 40 percent of hospice patients are fighting cancer, the majority of patients face other terminal illnesses?

Hospice care is about living well, and the more we can share this fact with the public, the better we can combat misconceptions and misunderstandings about the invaluable and highly beneficial services offered.

Hospice Numbers on the Rise

Hospice care enrollment skyrockets

Hospice is a growing and viable option for quality end-of-life care. In 1999, hospice was provided to at least 700,000 patients, up from 540,000 in 1998. Clearly, as Americans learn more about hospice, they are recognizing that it's the kind of end-of-life care they want and need.

As this quote, from an article in The Fort Morgan Times, explains, the number of patients taking advantage of hospice care is growing by leaps and bounds. With a jump of 160,000 participants in just one year, it looks as if attempts to educate the public about the mental and physical benefits of hospice are having a noticeable impact.

Hospice Takes Teamwork

No one person can serve the needs of hospice patients

Hospice care covers a wide spectrum of needs, more than any one person is capable of. Fortunately, this care is broken up among teams of trained professionals. For those who are unfamiliar with just how hospice works, here is the breakdown of a typical team, from a South Town Star article:

A hospice care team includes professionals, paraprofessionals and volunteers who are sensitive and responsive to individual patient and family needs:

• Physicians work with the patient's attending physician and are available for pain and symptom management consultation or house calls, as needed.

• Nurses skilled in assessing and managing pain and other symptoms, as well as providing hands-on care.

• Social workers are sympathetic listeners providing emotional support and help with financial issues and planning.

• Hospice aides help with personal care, such as bathing and mouth care, light housekeeping, light laundry and occasional shopping.

• Chaplains work with the family's clergy, offering spiritual support.

• Volunteers are trained to spend time with the patient when they are needed most.

• Bereavement specialists provide grief counseling, memorial services and other support for family and friends after the patient has died.

As you can see, the team covers the full gamut of services from physical to emotional, and takes into consideration not only the patient, but also family and loved ones as well. It is because of this thorough support that hospice care is consistently found to be one of the most effective forms of care for those living with terminal illness.

Dementia Patients Miss Out

“People with dementia get sicker inch by inch,” said Lin Simon, director of quality at Gilchrist Hospice in Baltimore, the largest hospice organization in Maryland. “Trying to say, ‘Now, she’s ready for hospice’ is much harder.”

Yet doctors serve as the gateway to hospice, which provides palliative care for the dying and support for their families. Medicare regulations require a physician to certify that a patient entering hospice is likely to die of his or her disease within six months. Doctors are more likely to do so when the disease is cancer or heart failure, which have more predictable trajectories.

That’s the major reason that dementia patients — who can benefit from the better pain control, fewer hospitalizations (so often associated with aggressive treatments that confer no measurable benefit) and greater family satisfaction that hospice has been shown to provide — are under-enrolled in hospice programs.

This quote, from a post on The New York Times "New Old Age" blog, by Paula Span, brings to light a frequently overlooked aspect of hospice care. A significantly lower number of dementia patients are admitted to hospice care as opposed to patients suffering from other conditions because of the difficulty in making a precise prognosis of their health, even though the benefits they gain are proven and significant. There is good news, though. Researchers are creating new standards and ways of more accurately diagnosing this often misunderstood disease, and with this research comes the hope of better care and more comfortable living.

Hospice Defined

Hospice care is about living well

Hospice is not a place. It is the provision of services to those who are living with a terminal illness. The services are uniquely designed and based upon one’s requests and expressed needs.

Hospice is not about dying! Rather, hospice promotes dignity, autonomy and the best quality of life possible while living with a terminal illness.

This quote, from an article in the Holyoke Enterprise, defines what hospice care is all about. Many hold a view of hospice as a closed off place where people go to die, while in reality this could not be further from the truth, Whether in a designated care center or your own home, hospice care aims to provide whatever is best for the comfort and happiness of the patient and their loved ones.