Hospice: A Critical End-of-Life Service (Part 1)

By Libby Hopkins, MA, BSN, RN, CHPN, CHPCA and Coalition Steering Committee member

Editor’s Preface: This month we will begin a two-part look into the critical end-of-life service known as Hospice. Coalition steering committee member, Libby Hopkins, will walk us through the ins and outs of Hospice and other options to consider as people make their own decisions for end of life care.

Besides volunteering with the Coalition, Libby has a litany of initials following her name. She is a Registered Nurse and holds a BS in Nursing, a Master’s in Organizational Management and a Graduate Certificate in Applied Thanatology (the study of death, dying and mourning). She maintains certifications as a Hospice and Palliative Care Nurse, and a Hospice Compliance Professional. Libby is currently the Director of Quality Improvement for Hospice of New Mexico, but her long career consists of serving in leadership, clinical and education roles for multiple NM hospice organizations, including NM VA Healthcare System, Presbyterian Home Health and Hospice, and Hospice of the Sandias, among others. In addition to serving on the Coalition steering committee, Libby is active with the Conversation Project and volunteers with the Chevre Kaddisha: participating in the holy washing ceremony for Jewish bodies at local mortuaries. She is a community presenter (as has presented nationally and internationally) on topics related to serious illness, palliative and hospice care. 

Patient-centered care at end of life is my passion. Ever since I first learned about self-determination, health care decisions, living wills and advance directives, I have sought to help patients make informed decisions (preferably early and in writing) and chart their own courses for their own end-of-life experiences. Ensuring that patients have an understanding of, and access to, the entire continuum of options available to them without judgment or influence outside of their own chosen loved ones and are able to freely select experts and health care providers is key. Informed decision-making is particularly important when it comes to serious illness and end-of-life care, during which many patients are involved in the “Palliative Healthcare continuum”, which includes Hospice.

The Hospice philosophy is one of “Care, not Cure”, and exists to promote quality of life during the time an individual has remaining, whatever “quality” means to the patient, and to his or her “family” as defined by the person. Hospice epitomizes self-directed and patient-centered health care, and focuses on the entire human being: physical, emotional, spiritual, and psychosocial.

The first hospice, as we know it today, was developed by Dame Cicely Saunders in England in 1967.  Dean of Yale School of Nursing, Dr. Florence Wald studied with Dr. Saunders, and Wald ultimately founded the first hospice in the United States in 1974 in New Haven, Connecticut.  In 1983, Hospice became a benefit for Medicare recipients, and is now covered by Medicare Part A, Medicaid, many private insurances, and the VA. Hospice eligibility is tightly regulated by The Centers for Medicare and Medicaid Services (CMS) and to be eligible one must have a 6-month life expectancy (if the disease runs its normal course) and meet other specific criteria related to their terminal diagnosis.

What is Hospice and How Does It Relate to Palliative Care?

The Palliative Care continuum is the wide umbrella under which Hospice falls. Unlike hospice care, palliative care itself is not covered under the Medicare Hospice Benefit, does not require a 6-month life expectancy and does allow for continuation of active, aggressive medical treatment. Anyone diagnosed with a serious, chronic or life-limiting illness is eligible for a palliative care consultation which is reimbursable through most insurance policies, including Medicare.

The Palliative focus is on assisting patients and loved ones to make informed and self-determined decisions about their care and treatment. Palliative care is based on holistic care and quality of life, whatever that means to the individual and addresses physical, spiritual, emotional and psychosocial aspects of the patient and whomever he/she identifies as family. Early palliative care and intervention greatly improves the possibility of a self-determined care process for disease management and ultimately for end-of-life care with smooth transition to Hospice care if and when appropriate and elected by the patient or representative. As depicted below, all hospice care is palliative, but not all palliative care is hospice.

Hospice services can be provided wherever the patient lives, from the patient or family’s home, a nursing home or assisted living facility, a homeless shelter, or even in the streets if this is the patient’s desire and it is a safe circumstance for care provision.  While over 90 percent of hospice care is provided wherever the patient calls home, there are four levels of care covered by the Medicare Hospice Benefit:

  • Routine Home Care – The most common level of care with regular visits by Hospice team members to home or facility;
  • Continuous Care -– Brief and more intensive level of home care for acute treatment of intractable symptoms in the home;
  • General Inpatient – Brief and more intensive level of care in hospital/facility to stabilize intractable symptoms that cannot be managed at home; and
  • Respite Care – a 5-day period, which can occur periodically, where the patient is placed in a facility and continues to be visited by the Hospice team to provide respite and time out for loved ones/caregivers.

Given the holistic nature of Hospice, it is not surprising that the Hospice team consists of a multi- and interdisciplinary team including specialized physicians, nurse practitioners, nurses, hospice aides, social workers, chaplains, bereavement counselors and volunteers. Additional practitioners may include physical and occupational therapists, speech therapists and others. The Medicare Hospice Benefit is very comprehensive and includes the provision of hygiene supplies, wound and skin care supplies, incontinence products and the like; medical equipment such as hospital beds, wheelchairs, shower benches, oxygen machines and many others; and medications related to the terminal hospice diagnosis. The Medicare Hospice Benefit is inclusive and the hospice patient has no additional charges for services related to the Hospice diagnosis.

If one qualifies, it is always a patient’s choice, or his/her representative’s, whether or not to utilize the Medicare Hospice Benefit. It is also within the patient’s discretion to determine which hospice to choose, to change hospice care agencies, and even to withdraw from Hospice care altogether. Patients who choose to revoke the hospice benefit for any reason, for example to give aggressive cancer treatment another try, are entitled to be re-admitted to the same or a different hospice whenever they choose, as long as they continue to meet the Medicare eligibility criteria

Considerations When Selecting Hospice Care  

Not all hospices are alike. While they all must follow certain very specific federal regulations set out by CMS, and are monitored by various state and other regulatory bodies, the fact is that there are many factors one must consider, i.e. location of services, quality of care, specific services provided, response time commitments, staff education and competence, education and support provided to loved ones while the patient is on service and after his or her death.

Patients in the United States have various end-of-life options, many of which are routine, readily available and legal in all states. Others depend on the laws of a given state, the patient’s specific illness, proximity to advanced medical resources, values and training of physicians and other providers, and many other variables which may limit or enhance accessibility. While all hospices must provide routine end-of-life inter-disciplinary comfort care as set forth by the Medicare Hospice Benefit, the following are some of the end-of-life care elements that those in the process of selecting a hospice may wish to inquire about, since some are not provided by all hospice agencies, or may be provided differently by various hospices:
  • Pediatric Hospice program
  • Expanded Volunteer Program (e.g. massage, Reiki, hair styling, special Veteran services, home-assistance, end-of-life vigil, legacy of life recording, music therapy, etc.)
  • Expanded Bereavement Services (e.g. special groups for various types of grief, care for minorities, Spanish or other languages, qualified care for grieving children, etc.)
  • Home Continuous Care if necessary and desired, and criteria met
  • General Inpatient Hospice unit if necessary and desired, and criteria met
  • Home ventilators, tracheostomy tubes, or feeding tubes and if so, under what circumstances Palliative interventions (e.g. radiation, blood transfusions, abdominal and chest drainage tubes)
  • Antibiotics if desired and appropriate
  • Interventions unrelated to hospice diagnosis
  • Variety of methods of medication administration and symptom management
  • Palliative Sedation (IV sedative medication to reduce consciousness to treat severe shortness of breath when other treatments have been ineffective)
  • Voluntary Stopping of Eating and Drinking (VSED)
  • Medical Aid in Dying (MAID) – this will be discussed more in Part 2
It is important to interview hospice agencies, and in some cases, you may wish to visit directly with a nurse or social worker in addition to the outreach liaisons who often coordinate admission logistics and paperwork and may not be licensed clinical professionals. There are a number of tools and questionnaires available to assist in asking salient questions when selecting a hospice provider. Here are two respected and widely used resources:

Additionally, CMS now has a website entitled “Hospice Compare”, which highlights and compares various care elements of hospice organizations, using data hospice agencies are required to submit to Medicare at regular intervals.

Hospices typically have access to the latest knowledge in pain and symptom management. In addition, they are staffed with Board certified Hospice and Palliative providers (some of whom have completed a Palliative Fellowship), specially trained personnel (many of whom are certified in Hospice and Palliative care), robust volunteer programs, and the latest equipment and methods of medication and treatment administration. Finally, Hospice directs its focus on patient-centered care – the person, his or her loved ones and their needs, and care and support of loved ones following the death. However, hospice care cannot meet all of the needs of every patient every time.
Many enter hospice with the expectation of avoiding a “bad death,” or at least one free from pain and suffering. But a “good death” means something different to each individual, because each person suffers differently, values different things, and has a different physical, spiritual, emotional, psychosocial, and experiential makeup. Over the years, hospice patients have shared with me what a “good death” means to them.  Some examples include: never becoming incontinent or having a catheter; never becoming dependent on others for their basic needs; not living when unable to recognize others or communicate their needs; being able to plan exactly when, where and with whom they would like to be with them when they die; not becoming disfigured; not wanting to die in the throes of continued seizures; never becoming bed bound; and dying before any pain or physical suffering could even start.

No entity or service can alleviate all aspects of individual suffering and meet the self-determined wishes of every individual, despite best efforts. Hospice is definitely a robust, comprehensive, and patient-centered set of services and with these options for care, the vast majority of people can achieve the type of end-of-life experience they seek, aka “a good death.”  And as with most things, the earlier you consider your choices for care, the more options you will have available to you, and the more likely it is you will achieve the kind of death you desire.

Editor’s note: Next month, look for Part 2 of our focus on Hospice, where we will explore how some hospice organizations are adjusting to meet the needs of patients in states where medical aid in dying is authorized.  

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