Surprising and little-known facts about hospice

Surprising and little-known facts about hospice

By: Craig Dresang, CEO

Death is inevitable, but it does not always need to become a tragic string of crises. More often than not, people living with a life-limiting illness will say, “I wish I knew about hospice earlier.”

Healthcare systems are accustomed to caring for patients with a combination of life-altering illnesses including cancer, Alzheimer’s, renal or liver disease, AIDS, and congestive heart failure.  Often, physicians reach a point where they cannot cure a person with multiple chronic serious illnesses.  When those curative approaches are no longer effective, the person may become weaker and weaker, less mobile, and unable to keep up with appointments.  They may slowly lose their appetite.  They begin having falls, infections, or mini-crises which land them in the local emergency room.  Eventually, they return home or are admitted to a nursing facility for rehab or other therapy.

Typically, these patients never really get better.  Because they are never fully cured of illness, the cycle of hospital to home to hospital begins. This cycle is not only costly, but emotionally, physically, and spiritually draining.

Still, both the doctor and patient can be reluctant to contact hospice because they feel like they are giving up.  Sometimes, they simply do not understand what hospice is really about.  Physicians do their patients a disservice when they say, “There is nothing more I can do.”  There is always something more.  It is called hospice . . .   an alternative approach to care that is focused on helping the patient live fully and comfortably for as long as they can.

If a physician waits too long to talk about hospice with a patient, the patient may miss out on all of the benefits that hospice can provide.  Patients should not wait for their doctor to bring up the topic of hospice.  If you live with advancing chronic illness and are thinking about how you want your life to go, you might turn the table and ask: “Hey doc, would you be surprised if I died in the next year?” This is a bold and proactive way to open an honest dialogue with your doctor and get the kind of support you need.  According to the Centers for Medicare and Medicaid, only half of Medicare recipients who die receive hospice care.

Contemporary research conducted by academic medical centers including Harvard Medical School, Stanford University, and the National Institutes of Health have clearly illustrated the benefits of hospice care for patients who access this level of support earlier in their diagnosis.  In brief, studies have brought to light the following set of facts:

With hospice, you may live longer.
Usually, a person begins to feel better once the pain and symptoms of illness are better controlled. According to a study in the Journal of Pain and Symptom Management, hospice extended life an average of 29 days. Some patients who initially received a six-month prognosis begin to stabilize with good hospice care and have lived an additional two or three years while remaining on hospice.  By careful management and treatment of symptoms, and care for physical and emotional well-being, patients felt better, which may have given them the will and fortitude to live longer.

Hospice is a fully covered benefit.
Hospice is covered by Medicare, Medicaid and most private insurance plans. YoloCares provides care for hospice appropriate patients, at no cost, regardless of their insurance coverage or ability to pay.  Hospice patients receive physician services, nursing support, a nursing aide, social worker, spiritual support (if wanted), a professionally trained volunteer, all prescriptions related to their diagnosis, durable medical equipment (oxygen, hospital bed, adult briefs, etc.), and 13 months of grief support for loved ones . . .  all at no cost to the patient or family.

Hospice is not just for people with cancer.
Care is available for a wide range of people who have decided to no longer pursue a cure for their illness, and instead seek comfort, symptom management and quality of life. These patients have life-limiting illnesses such as end-stage heart, lung or renal disease; dementia; ALS; stroke, and neurological disorders, among others. Less than half of hospice patients have a cancer diagnosis.

Most hospice care occurs at home.
Hospice is not a place, but a philosophy of care that involves the patient’s entire support system. Nearly all patients are cared for in their home, or the place they call home, surrounded by the people and things they love. The care team comes to you — in your home, along with the equipment needed, medications and supplies, all covered under the hospice benefit.

You stay in control.
The end of life is a very personal experience with a lot of medical needs. Once in hospice, a patient’s goals and values are incorporated into their care.  Patients will be asked, “What brings you joy?” and “What is most important to you?” The care team wants to know what a good day looks like to you. Working together with you, they design the care you want, in the manner you choose, on your terms.

 Signing up does not mean giving up all medical care.
Hospice care provides medications and therapies that better manage symptoms and provide comfort. Hospice means creating the best quality of life for the days you have left. In doing so, you remain in charge of your medical decisions.

 You can change your mind.

Goals and needs may change over time. If you choose to seek aggressive medical treatment, hospice may not be for you. You have to qualify for hospice, but you can opt out at any time for as long as you like. You can also opt back in later.

Hospice is for the entire family, now and later.
The support provided to the family lessens the burden of care and the stressfulness of death. The YoloCares Center for Loss & Hope promotes healing by providing support for 13 months for family and loved ones.

You have to ask for the hospice of your choosing.
Not all hospices are the same, so you have to ask for the hospice you want by name.  There are more hospices in Sacramento region (61) than there are in the entire state of Florida.  Only two of them are independent nonprofit community providers.  The rest are either for-profit companies which tend to have lower quality scores or are part of a large health system.

Healthcare systems can be wired to take every measure to prop up a body indefinitely without much regard for the physical, psychological, spiritual, or financial costs. At some point, the patient may need to say “no” to that next treatment or ask about the trade-offs that come with aggressive curative approaches.  As informed consumers of healthcare, it is important that you receive the care that suits you.

For more information about hospice or palliative care, or to make a referral, please call YoloCares at 530-758-5566 or visit us online at www.yolocares.org.