Learn the Truth About Hospice Care for Advanced Illness

Here are the facts about how hospice and palliative care can give your family help and hope when they need it most.

Hospice and palliative care services focus on meeting the physical, emotional and spiritual needs of a person with advanced illness, and also provide support for the patient's loved ones. Care can be provided wherever the patient resides, including the person's home, residential or skilled nursing facility, or assisted living environment. As a medical director for San Diego Hospice & Palliative Care (SDHPC), one of my goals is to raise awareness of how palliative care can help. In a survey of San Diego County residents, while a majority had heard of hospice, more than half were not able to name any hospice services. For example, many did not know that hospice provides bereavement support and special programs for children, or that most insurance programs cover the cost of hospice care. To help you understand hospice care as a healthcare resource, I've compiled this list of myths and facts.

Myth 1

Medicare provides only six months of hospice care, so delay enrollment as long as possible.

FACT 1

Medicare law does not time-limit the hospice benefit. Patients have access to the Medicare Hospice Benefit as long as the patient's physician and the hospice medical director certify the patient is living with an advanced illness, with a projected life-expectancy of six months or less as the disease runs its normal course. Some patients have been enrolled in hospice care for months to years.

Myth 2

All hospice care is the same.

FACT 2

Even in the same community, hospice programs can differ in the services and/or treatments that are offered to patients and their family members. There are 14 different hospice programs in San Diego County, all independent of each other. In most cases, patients and families can choose which hospice program they want to use.

Myth 3

Patients cannot receive chemotherapy, radiation, or transfusions while on hospice care.

FACT 3

While some hospice programs may not provide treatments, others will evaluate the needs of each patient. If the treatment promotes comfort and quality of life, some hospice patients may receive treatments such as chemotherapy, radiation, and transfusions.

Myth 4

Hospice means giving up hope.

FACT 4

Hospice can help to redefine hope for patients and their loved ones. Hospice workers recognize the importance of hope as a powerful, ever-changing force that continues throughout the time of living and the process of dying. Hospice offers hope that patients can continue to live pain-free and do the things that they like to do. Hospice offers hope for freedom from the fears of isolation and abandonment -- hope that the family will be nurtured and supported, even after the death of the patient.

Myth 5

Hospice is only useful for heavy-duty pain medications.

FACT 5

Hospice care is designed to provide not only medical care, but also social, psychological, and spiritual support delivered by an interdisciplinary hospice team that may include a nurse, social worker, chaplain, home health aide, and other professionals and trained volunteers.

Myth 6

You can't keep your own doctor on hospice.

FACT 6

A patients can continue with the primary physician while they are receiving hospice care. Most hospices establish working relationships with a wide base of referring physicians so patients can keep their own doctors on admission to hospice care. Furthermore, patients and their primary physicians can ask for consultation from the palliative medicine expert physicians at some hospice programs.

Myth 7

Hospice is only for cancer patients.

FACT 7

Hospice care is available to individuals with any advanced illness including end-stage heart and lung disease, cancer, ALS, Alzheimer's, AIDS, or severe birth defects. Hospice care also supports the patient's family members and loved ones of all ages during the illness, and offers extensive bereavement support after the death.

Myth 8

Hospice is a facility, so you must leave your home to receive hospice care.

FACT 8

Hospice is a philosophy of care for people who are living with an advanced or life-limiting illness. Care is provided in the patient's home or wherever the patient resides, including in residential, skilled nursing, and assisted living facilities. Some hospice programs, such as SDHPC have actual facilities a patient can use if needed.

Myth 9

Hospice patients must sign a Do Not Resuscitate (DNR) form to receive care.

FACT 9

Not all hospice programs require patients to complete a Do Not Resuscitate form to receive hospice services at home, in long-term care facilities or in contracted hospitals. However, a DNR form may be required prior to admission to an in-patient care center.

Myth 10

Hospice is expensive.

FACT 10

Hospice care is a cost-effective and valuable healthcare resource for individuals living with a life-limiting illness. Most insurance providers, including Medicare and Medi-Cal, cover the cost of hospice care. Some programs have funds for individuals without insurance or the means to pay for hospice services.

Who can say?

Anyone can make a referral to hospice care. Usually, hospice programs then contact the patient's physician to verify that hospice care is appropriate for this patient at this time. Most hospices have medical staff to help patients who have no physician. If you have a loved one who is seriously ill, accept a physician's referral to hospice with peace of mind. The best possible care awaits you and your family.
ANGELS ON EARTH In 2002, my family and I met some angels on earth. They were hospice doctors, nurses, and attendants.

Sad news

In January of 2002, we received the shocking news that my father had melanoma that had metastasized to his lung, but it wasn't until July of that year that we faced the onset of significant symptoms. My dad was in and out of hospitals, different treatments were suggested, some tried. He was on multiple medications, one resulting in a severe skin rash that caused considerable discomfort. We were desperate to provide him with the best care possible and keep him as comfortable as possible. It felt like our world was spinning out of control. The whole family tried to care for him the best we could but, except for my exceptional sister-in-law Kathy who is the kind of nurse you'd choose to care for you (if you had a choice), we were not trained professionals able to provide the care my wonderful father deserved. He had been through so much in his life without complaining. And still he didn't complain, but we knew he needed us to make him comfortable and peaceful in the last months of his life.

Enter hospice care

When Dad's physician referred hospice to us, we wondered, like many people do, what it means when your loved one is ready for hospice care. To be honest, it scared us just to hear that word. But what we learned about hospice changed our thinking from the start. Having hospice care for my Dad meant bringing him home from the fourth hospital he'd been in over the previous few months. We had a hospital bed delivered and set up in his own room and Dad rode home in style -- in an ambulance (no lights and siren). Everyone in the family, including the grandkids could spend time with Dad anytime we could be there -- that's my dad and my son in the photo. It's hard to express in words the kind of gift this was for all of us. Once we had Dad home and had all the equipment we needed, the hospice angels started visiting. We had medicines delivered, doctor check-ups and consultations about treatments, attendant visits for basic care of a bedridden person. They taught us so much we could then do ourselves more efficiently in between their visits. They were available any time of the day or night to answer questions or come to our aid. We were amazed at the difference hospice made in our lives. Truly amazed.

Caring for Dad at home: Priceless

The difference between the hospital and hospice care at home for my Dad was vast. I saw for myself how the quality of life for Dad and my whole family changed for the better the moment hospice care entered our world. Dad passed away in September of 2002, at home, having spent many hours comfortably with all of us, eating his favorite ice cream, double chocolate fudge, and watching his favorite TV show, Everybody Loves Raymond, which wouldn't have been possible without hospice. -- AnnMarie Garcia
hospicecustomer
When my wife enter a hospice facility for pain management, she could converse, walk short distances with a walker, bath herself with a wash cloth, fed herself, sit up, watch TV, sit in a chair, look at a newspaper, etc. With a little help, she could take care of her basic needs. A few hours after entering a hospice facility, hospice managed to turn her into a bedridden zombie that can no longer do any of these things. Since she has been here, hospice has fed almost nothing her nothing and has given her little to drink. Actually, they almost immediately put her in a condition where she could not eat and could only occasionally drink small amounts. Of coarse they blame this rapid, almost instantaneous, decline on her. Hospice claimed that it was completely innocent of this immediate decline. After I complained, hospice reduced the medication, so now my wife can tell someone that she is thirsty, hungry, or in pain. Unfortunately, hospice had weaken her so much that she remains an invalid. Hospice’s policy seems to be to get the patient to the morgue as quickly as possible. It seems to be practicing a form of covert euthanasia. I am convinced that hospice has taken days if not weeks off my wife's life. Don’t let hospice get its hands on anyone you love — especially at one of its facilities.