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Hospice Care: Practical Information & Personal Reflections

While a cancer diagnosis is no longer tantamount to a sentence of death, in my Mother’s case, it was. In August of 2004 a five-inch malignant tumor was discovered in the liver of my otherwise healthy, vibrant and active 74-year-old Mom. The diagnosis was inoperable and untreatable liver cancer; therefore, I had no choice but to ultimately accept the fact that she had approximately six months to live. In the fall of 2004, I attended a seminar offered by a local hospice designed to educate those professionals who provide services to the elderly on the fundamentals of the hospice program. While the information presented proved to be helpful to me in counseling elder law clients, the main benefit that I derived was personal.  I learned how this organization could assist my only surviving parent as well as family and friends in coping with the dying process on all levels.

This article addresses the following topics: history and structure of hospice, payment for services, services covered by Medicare. As suggested by the title of this article, one of the purposes in writing this piece is to share my individual perspective as a daughter and long distance caregiver. I therefore conclude the article with my own personal reflections.

The linguistic root of the word “hospice” is the Latin word “hospes” which refers either to a visitor or host who receives the visitor. The word “hospital”, “hospitality” and “hostel” share the same origin.  Dame Cicely Saunders, an English physician, started into motion the chain of events that would evolve into the modern version of hospice care. The hospice concept was first introduced to the medical community in the United States in 1965 by Dame Saunders who subsequently founded St. Christopher’s Hospice in London in 1967. She lived out her final days in that facility where she passed away at age 87 on July 14, 2005.

Over the last half of a century, the hospice concept has evolved into a philosophy of care as opposed to a physical location. The current emphasis is on assisting patients to remain at home during their final days with medical professionals and volunteers offering in – home expert support to family and friends in caring for the dying person. Inpatient hospice units are available for those whose medical conditions cannot be safely or adequately addressed outside of an institutional context.  Cindy Baptista, RNC, CHPN, Director of Hospice, Palliative and Oncology Care at Moorestown VNA & Hospice summed it up like this:”Hospice allows a patient to live their final days in comfort, and with dignity. It gives the family physical, emotional and spiritual  support so they can share the precious time they have left with their loved one. Hospice is truly a gift we can give to our loved one and ourselves.”

According to the 2017 edition (rev. April 2018) of NHPCO Facts and Figures: Hospice Care in America” published by the National Hospice and Palliative Care Organization, approximately 1.43 million patients on Medicare received services from hospice in 2016. Furthermore, there were 4,382 Medicare certified hospice programs in operation in all 50 states, the District of Columbia, Puerto Rico, Guam and the U.S. Virgin Islands. (By comparison, there were approximately 3,300 operational hospice programs in the United States serving an estimated 950,000 patients in 2003.)

Currently, cancer patients account for 27.2% of hospice admissions. The top five primary non-cancer diagnoses (other than “debility unspecified” and “other”) included dementia, heart disease, lung disease and stroke or coma.

Hospice’s fundamental mission is to assist terminally ill individuals in living out their remaining days with dignity. The program is structured to provide palliative rather than

curative treatment. Thus, the emphasis is on managing pain, enhancing comfort and quality of life as well as providing spiritual and emotional support to the patient and the family. The tricky issue is when to seek hospice intervention. A requirement for enrollment is a medical diagnosis of a terminal illness which is generally measured by a prognosis of a life expectancy of six months or less. Statistics show that most do not take advantage of the program until death is imminent. Indeed, the length of service for 27.9% of patients in 2016 was less than 7 days.

The failure of so many to take advantage of the hospice benefit at an early date may be attributed to lack of education as well as reluctance to admit that someone is facing the end of their life. The prevailing attitude seems to be that life is over once hospice comes in. In addition, some individuals suffering from a serious illness choose to exhaust every available curative treatment no matter the agony that it may cause or the odds of success of the treatment, thus precluding the availability of hospice.

One of the most distinctive elements of hospice care is its focus on the family and other loved ones of the sick person. Assistance in the form of bereavement services is available after the patient’s death. In fact, regulations require completion of a bereavement assessment in order to determine whether family members are at serious physical or mental health risk after experiencing loss.

PAYMENT FOR SERVICES

Fortunately, most have no need to be concerned about how hospice care will be financed. Most private health insurers, health maintenance organizations (HMOs) and other managed care plans as well as the Department of Veterans Affairs provide coverage for hospice care. If a patient has limited financial resources and no insurance or is ineligible for governmental benefits, many hospices provide services without charge.

Until 1982, Medicare did not cover hospice services. Under legislation enacted in 1986, Congress established the permanency of the coverage. Finally, hospice was included as a nationally guaranteed benefit under President Clinton’s 1993 health care reform proposal.

Those seeking Medicare hospice benefits must satisfy the following criteria: (1) The patient must be eligible for Medicare Part A. To qualify for Part A an individual must fall within one of the following categories: age 65 or over, qualified for Social Security disability benefits for at least two years, suffer from amyotrophic lateral sclerosis (ALS), have had a kidney transplant, or need regular dialysis; (2) the patient’s physician and the hospice medical director must certify that the individual has less than six months to live if the disease runs its normal course. However, it should be noted that the hospice benefit consists of two 90-day certification periods and an unlimited number of subsequent 60-day periods. While the first 90-day certification must be issued by both the attending physician and the hospice medical director, all recertifications may be issued by either of them; (3) The patient (or legal representative) signs a statement choosing hospice care instead of other Medicare covered benefits to treat the terminal illness. However, Medicare will continue to pay for covered benefits for health issues not related to the terminal illness. The patient will be responsible for any co-pays or deductibles; and (4) The care is received from a Medicare approved hospice program. According to the NHPCO, approximately 90% of hospices are Medicare certified.

Services Covered By Medicare

The Medicare hospice benefit is provided under Medicare Part A (Hospital Insurance). In recognition of the diverse intensities of care required by hospice patients, four levels of care are offered: Routine Home Care, Continuous Home Care, Inpatient Respite Care, and General Inpatient Care. The classification determines the rate of reimbursement from Medicare. Not surprisingly, most of hospice care falls into the Routine Home Care category.

The following services are not covered: Treatment to cure terminal illness; charges for room and board for hospice care in home, a hospice facility nursing home or other long term care facility such as assisted living; any care, medications, equipment or transportation that is not authorized by hospice.

The services offered include providing educational material and classes to the survivors about the normal grieving process, ability to participate in support groups, periodic visits by a bereavement volunteer and referral to a mental health professional where appropriate. Terminally ill patients not yet in hospice are entitled to a one-time educational consult by a hospice physician. Many who have benefitted from the services ultimately choose to participate in the hospice volunteer program. Volunteers are able to offer an extraordinary depth of comfort and support as a result of the compassion and empathy that is developed through the experience of their own personal losses.

Federal law requires a hospice provider to maintain written policies and procedures regarding advance directives as set forth in Section 1866 (f) of the Social Security Act. The patients must be informed of their rights to refuse or consent to treatments, and how to legally execute an advance directive. However, the provider may not require execution of an advance directive as a condition of providing care and may not discriminate against an individual who refuses to sign the document. Likewise, a signed DNR order is not a prerequisite to acceptance to the hospice program.

PERSONAL REFLECTIONS

After my Mother’s cancer diagnosis, my family explored all treatment options and early on, she submitted to a mild form of chemotherapy which landed her in the hospital. She decided (after a great deal of soul searching and prayer) to forego curative treatment and let nature take its course. She wanted to live her remaining days to the fullest extent possible. The pain and nausea that she experienced during the initial five months after her diagnosis were by and large controlled through relatively low doses of the appropriate medication. I happily flew out to my hometown where she still lived eight to ten days each month. We shopped, we ate, attended religious services, visited with friends and family and had a lot of fun. However, at the beginning of the sixth month, both the pain and nausea began to escalate. Like many cancer patients, she refused to take the morphine until she was actually in pain. The reason that pain is often under treated is the unsubstantiated fear of addiction or side effects. Indeed, my mom wanted to retain her lucidity and also felt that taking regular doses of morphine was an admission that the disease was getting the best of her.

Based on my understanding that one of hospice’s major roles is pain management, I began to investigate the program. I knew that my mom was eligible since she met the life expectancy requirement, was no longer seeking a cure, her physician agreed that hospice was appropriate and she was living in a secure environment with my stepfather acting as primary caregiver with the assistance of friends, church members and me. The myriad of available services convinced me that the program was right for our family. Since there was only one hospice in her town, the choice was easy. For those who live in communities that support multiple hospices, it may be wise to conduct phone interviews to help in determining which program is right for the family. Consider the following suggested questions reproduced from the website of the Hospice Foundation:

  1. Does the hospice serve the area in which the patient resides?
  2. How long has the hospice been in operation?
  3. Is the hospice certified by Medicare?
  4. Does the hospice accept Medicaid?
  5. What other insurance is accepted?
  6. Is the hospice licensed by the State?
  7. What services does the hospice provide?
    – Phone calls to the family?
    – Mailings on what to expect?
    – Support groups?
    – Retreats or activities for the family?
  8. What, if any, hospice services does the hospice not provide?
  9. Is participation in care by a family caregiver required for hospice enrollment?
  10. What is expected from the family caregiver?
  11. How can hospice supplement the family’s responsibilities?
  12. To what degree are volunteer services available in the home?
  13. What, if any, out-of-pocket charges can we anticipate? For what services?
  14. How often does hospice staff make home visits? (E.g. once a day visits, every other day visits, or once a week visits? Note: This will change as the patient’s condition changes.)

Nurse ___________________________

Social WorkerSocial worker ______________
Home health Aide ______________________
Doctor ________________________________
Volunteer ______________________________
Pastor or chaplain ______________________

  1. Who provides on-call coverage during nights and weekends? The staff of the hospice?
  2. Is a home health aide on duty 24 hours a day if needed? 12 hours a day?
    Is on-call coverage contracted out to other persons?
  3. Does the hospice have contracts with local long-term-care facilities?
    If so, which one(s)?
  4. Does the hospice have an inpatient facility?
    Does the hospice contract for this?
    May I tour the facility?
  5. Does the hospice provide funeral arrangement support?
  6. What bereavement services are provided?
    Type: Individual ______
    Group______
    Duration of Sessions: ______
    Extent of Support: month ______
    6 months ______ year ______
  7. Are bereavement services performed:
    In person? a) Individual sessions? b) Group sessions?
    By phone? __________
    (Some programs offer only bereavement follow-up phone calls)

Cynthia Sharp, Esquire is Advisor Emeritus at Scott Counsel, PC in Cherry Hill, NJ and can be reached directly at 609 923 1017.  Check out www.scottcounsel.com if you are interested in additional information in the elder care area.

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