Does Hospice mean giving up?

I volunteered with two local hospice organizations for several years until my husband was diagnosed with cancer. It is not recommended for hospice volunteers to continue working if they are personally dealing with a serious illness. After my husband died, as a volunteer with Buena Vista, I provided respite for the family member/care person providing day to day care for the Hospice patient.  I still remember the day I stayed with a gentleman so his wife could go out to buy some plants and how pleased she was returning with the plants to put in her front yard.  She and I have remained friends since he passed away about 6 years ago.

Volunteering with the hospices made me aware of the many benefits hospice professionals and volunteers provide for their patients and families.  Medicine Net defines hospice care as follows. “Care designed to give supportive care to people in their final phases of a terminal illness and focus on comfort and quality of care, not cure.  The goal is to enable patients to be comfortable and free of pain and to live each day as fully as possible.” A hospice team may include a doctor, nurse, social worker, clergy person if desired, home health aide and trained volunteers.  Hospice also offers help for the family including counseling and respite.

Hospice services can be provided in a hospital, home or nursing home setting.  Eighty percent of Americans say they would rather die at home but more die in hospitals than any other place.  Only 25 percent die at home now. My husband believed that choosing to go on hospice meant that both you and your family were giving up, so he was not anxious to accept this as a solution.  Currently my friend’s very ill mother refuses to consider hospice care for the same reason that my husband hesitated.  There are many myths about hospice which may preclude a terminally ill person from choosing the services they offer.

I recently attended a seminar on hospice care presented by Livingston Memorial Visiting Nurse & Hospice.  They view death as a normal part of life but in no way attempt to hasten or delay death. It does seek to improve the quality of life for the patient and family.

The Livingston presentation listed the following hospice myths:

1. Hospice care means giving up hope.  One way to think about it is as follows: “People who choose hospice care are not giving up hope; they are in fact redefining it. Although there may no longer be a possibility of curing their illnesses, they redirect their hope into mending and restoring relationships, spending quality time with those they love and finding peace and comfort.” 
2. Choosing hospice means you can no longer see your primary care physician for issues unrelated to your hospice illness. You can still see your primary care physician while on hospice. In fact your doctor will coordinate with hospice for your care.
3. Hospice administers morphine to speed up dying. Morphine is used to treat pain and give comfort to the patient. There is no evidence that morphine speeds up death if the right dose is administered.
4. Hospice means you no longer have a say in your care. The patient always has the right to decline care, even give up hospice and go back to regular care.
5. Once you start hospice you cannot stop it. You can always stop hospice at any time. In fact, many people go on and off hospice several times if their health improves.
6. Hospice care is expensive. Medicare covers hospice. For patients who qualify, Medicare will cover any expense for care that is reasonable and necessary for easing the course of a terminal illness in the home or in a care or hospice facility.

None of these myths is correct, but they do cause confusion and can result in a patient and family refusing hospice services even when they are recommended by their physician.

Who qualifies for hospice? Medicare’s published guidelines are that the person choosing hospice must be entitled to Part A of Medicare and be certified as being terminally by a physician and having a prognosis of 6 months or fewer if the disease runs its normal course.  A Medicare approved hospice must be selected. The Medicare hospice benefit continues as long as the physician and the hospice doctor certify that the patient is terminally ill.  Hospice care can be discontinued if the patient’s health improves and reinstated if it deteriorates again.  As a Long Term Care Ombudsman, I have visited facility residents who have gone off and back on hospice care for years.

It is important to carefully research the quality and record of the hospices you consider.  The Affordable Care Act of 2010 requires that the Centers for Medicare and Medicaid Services (CMS) publish a report to make hospice care more transparent and to help patients and families make more informed choices about end of life care.  You can find information on local hospices at Medicare.Gov/HospiceCompare.

More than 1.4 million Americans are choosing hospice care every year.  This is expected to grow in the future, which will increase the demand for high quality care for patients and their families in years to come.