Understanding Hospice & Palliative Care: Are They for Your Loved Ones?

Let’s celebrate knowing how you want your end of life to be and participating in Hospice and Palliative Care services available to us all when the time comes during National Hospice and Palliative Care Month.

Don’t know what Hospice and Palliative Care means? Think hospice hastens death? Think people are drugged when they are on hospice?

It’s time to clear up the myths and see the real benefits people especially our senior loved ones can gain from participating in end of life care.

There is a new report prepared by the National Hospice and Palliative Care Organization (NHCPO) in 2014 called NHPCO Facts and Figures: Hospice Care in America that details the latest trends in end of life care. In fact, it is estimated that 1.5-1.6 million people received hospice care in 2013 but many more could have benefited.

What is the difference between Hospice and Palliative Care?

Hospice is a model for care for people at the end of life. It supports not only the patient in need but the family caregivers too. It provides medical care, pain control and emotional/spiritual support. It is a supportive process not a curative one so you are expected to be within six months of death.

Hospice care can be provided in the home or nursing facility, such as nursing home or hospital. Two thirds of hospice care takes place in the home. There are hospice houses that admit patients near death in an environment suited for comfort.

When not in a facility, the staff of hospice is on call around the clock, seven days a week. Regular visits are made by members of the team including nurses, aides, social workers, chaplains, volunteers, therapists and dietitians.

Palliative care is slightly different than hospice. According to the NHCPO, palliative care “is patient and family-centered care” in which quality of life is optimized through “anticipating, preventing and treating suffering.” They treat “physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice”.

The main difference is that curative or life prolonging care can be given. It is the same as hospice with its primary goal being to maintain comfort and provide comfort through the expertise of a multidisciplinary team and can be provided in home or a facility.

Myths of Hospice Dispelled

Many people, especially older adults who have experienced family members over the years in the final days of their lives, have perceptions about hospice care that are no longer true. They may have been true at one time, but no longer.

Let’s look at some of these myths.

  • Only people who have cancer use hospice. Many people in the past who received a diagnosis of cancer discovered that it was a terminal condition. Today, large numbers of people diagnosed with cancer are survivors. In fact, cancer diagnoses in hospice made up only 36.5% of those receiving hospice care. Cancer deaths overall account for only 25% of US deaths. The top diagnoses for those receiving hospice care are dementia, heart disease, lung disease and debility.
  • Hospice care is expensive. Medicare has a hospice benefit as part of its plan. Every older person who uses Medicare is covered for hospice care if desired. Currently about 30% of those on Medicare who die were in hospice care. According to the report, “hospice care is covered under Medicare, Medicaid, and most private insurance plans, and patients receive hospice care regardless of ability to pay.”
  • You have to be near death to need hospice. In fact the average length of stay for a person receiving hospice care was almost 73 days in 2013. Not only that, but 11% of those receiving hospice in 2013 remained under their care for longer than 180 days. The median number of days that hospice care is provided during that time was 18.5 days.
  • You have to die at home when you are in hospice. You can choose to die in the comfort of your own home surrounded by your loved ones or you can choose to be in a facility. Some people wish to have the safety net of a nursing facility when the time comes. It depends on your wishes.
  • Only adults can get hospice care. Any age person who qualifies for comfort care can receive the benefits of hospice care. 1% of those who were treated by a hospice program were kids (pediatrics).
  • People are “drugged up” and die faster when they are in hospice. The main goal is to provide pain management and comfort for those who opt to receive hospice care. Today’s hospice professionals maintain dignity of the person for whom they care. There are many medications or other non-pharmacological interventions that are used to provide pain management. Treatment is based on individual needs and under the direction of the patient himself or family caregiver. Hospice does not speed death or prolong it but allows the person to remain comfortable and pass with dignity. The illness progression is what causes death not the medication a person is given.
  • I can’t keep using my doctor. Most hospice care providers work with your personal physician. There may also be a medical director working with the hospice provider that oversees the healthcare team.
  • No one survives hospice. You might be surprised that people actually survive hospice and leave the program. Sometimes there is an improvement in the medical condition of the person in hospice and therefore if you no longer qualify for hospice, you can be released. In the future, if the person has a medical decline, they can be readmitted to hospice care.

Services Provided by Hospice

Hospice programs provide many services. Each member of the team brings special expertise to help the person under their care receive the best treatment.  Care is dictated by the wishes of the person receiving care and their family caregivers.

  1. Pain management
  2. Symptom management
  3. Emotional and spiritual support
  4. Medications, equipment and supplies provided
  5. Visits by nurses and nurses aids
  6. Teaching of patient and family members
  7. Volunteers
  8. Social service support
  9. Respite
  10. Bereavement counseling

Naturally, whether you and your senior loved one decide the time is right to consult with a hospice or palliative care organization will be a difficult decision to make. It helps if your senior has advance directives in place or documented his or her wishes in a form, such as the Five Wishes, to guide you. This will help direct you on what type of care they desire when end of life is imminent.

You should discuss with your senior’s doctor the possibility of hospice care and when it would be appropriate to begin because often times, senior’s will qualify for this special care but elect to participate too near the end when they could have benefited much sooner (and you as a caregiver).

“I’ve told my children that when I die, to release balloons in the sky to celebrate that I graduated.For me, death is a graduation.”

Elisabeth Kubler-Ross

2 thoughts on “Understanding Hospice & Palliative Care: Are They for Your Loved Ones?”

  1. My father in hospice care at home has had a different experience than the one you describe in your bulleted section “People are ‘drugged up’ and die faster when they are in hospice”. He was not experiencing pain. He has COPD, congestive heart failure and a blood disease. He was supplied with oral morphine and told that it was for breathing difficulty or to help him sleep. Now he is, of course, dependent on it. His personality has changed, but most of all his short term memory is failing after only three weeks of use.
    By the way, who decides what “dignity” is? A nurse’s idea of undignified might not match how a family sees it. That’s a value judgment.
    When you say treatment is under the direction of the patient himself or family caregiver, that’s not our experience. I’ve expressed grave concern to no avail. The patient can’t remember our conversations about the morphine use. This Medicare hospice treatment can easily speed my father’s death by slowing down his damaged heart too much when he forgets he already drank one vial and takes another.

    • We are saddened by your experience in hospice care thus far because that is not the standard in this industry. Speaking from personal experience, hospice providers are caring, loving people who try to give comfort and dignity at the end of life. If you are having continued concerns with this particular company, there are a great number of caring hospice companies and professionals who will meet your father’s care needs putting him and the family at the center of their treatment plan. We encourage you to seek another company for the benefit of your father.

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