Hospice

INTRODUCTION

In a manner of speaking the physician does occasionally have to tell a patient that she has to die because there is nothing more that can be done to cure her disease. That does not mean that there is nothing more the physician can or should do for the patient. High-quality palliative care for the dying patient is available, and one way it can be provided is through hospice care. As indicated in research last updated in September 2004, most physicians will benefit from a better understanding of hospice.

“… the need for greater professional understanding of options for end-of-life care, including hospice, has been highlighted in several recent congressional hearings and in other public forums. The need for physician education in end-of-life care is prevalent and one of the biggest hurdles to overcome is convincing current and future physicians that dying and death is not a medical failure.”³

Hospice is a very useful tool for the physician. It is one that he will need to employ more often as the baby boomer generation ages and the demand for palliative care increases correspondingly. Not to provide appropriate end-of-life care is not only inconsistent with the practice of medicine, it can also be illegal.

The Lester Tomlinson Case
Lester Tomlinson⁴ was an elderly cancer patient, diagnosed in November of 2000 with mesothelioma due to occupational exposure to asbestos. His prognosis was terminal. He executed an advance directive that stated he wanted to receive all medication necessary to relieve as much pain as possible, even if the medication might actually accelerate his death. He was living at home until January of 2001 when he was admitted to a hospital for chest pains. His primary care physician’s admitting orders were 1-2 tablets of Vicodin every 4 hours as needed. He was in the hospital for four days, and although the nurses recorded pain levels that at times were as high as nine on a scale of ten, his medication was never adjusted. He was then released to a skilled nursing facility. Because his transfer order did not include a prescription for pain medication, his intense pain went totally untreated for four days. Over the next two weeks he suffered needlessly from a lack of care. Mr. Tomlinson suffered extreme and unnecessary pain which ultimately led to lawsuits against multiple health care providers all of whom settled. The California legislature reacted to this case, and many others, by mandating CME in pain and palliative care for all physicians except pathologists.

It is very likely that neither Mr. Tomlinson’s horrific pain nor the psychological and financial damage to the health care providers would have happened if he had been in hospice care. Responsibility for his care would have been transferred to a hospice team trained and devoted to his comfort throughout the process of his dying.

WHAT IS HOSPICE?

The English word “hospice” derives from the Latin noun “hospes” meaning “host.” There are two current usages of the term. One, dating back to the Middle Ages, refers to a lodging place, usually maintained by a religious order, for travelers, young persons or the underprivileged. The other, which came into common parlance in the mid-20th century, refers to “a facility or program designed to provide a caring environment for supplying the physical and emotional needs of the terminally ill.”⁵ While both usages resonate with the idea of the special responsibility a host has for the comfort and well being of others, the second is the one we are dealing with here.

“Hospice” in this sense was first applied to special care for the terminally ill by a London physician, Dame Cicely Saunders.⁶ Dame Saunders brought her idea to the USA in 1963 in a lecture at Yale University. The idea spread quickly from there and in 1969 Dr. Elisabeth Kubler-Ross published On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families. Based on interviews with more than 500 dying patients, the book set forth the idea of 5 stages of death – denial and isolation, anger, bargaining, depression and acceptance - and made the case for home care for dying patients. The book became an international best seller, the media and public became interested in the issues, and in 1972 Dr. Kubler-Ross testified at a Senate hearing on “death with dignity,” saying: “We live in a…death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize [these] people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”⁷

The legislative process took its ponderous course, but in 1986 Congress made hospice care eligible for Medicare reimbursement, confirming the movement toward the inclusion of hospice as an accepted part of health care. Figure 1 is a list of the eligibility requirements a patient must meet to qualify for hospice care under Medicare. Included as Appendix A are highlights of the program covering a variety of topics.

Today hospice is covered by most health insurance plans, and 90% of hospice care is delivered in the home.

Hospice is not a place. It is an idea about care for a dying patient, and it is focused on the patient’s comfort rather than a cure or restoration of health. A patient does not go to a hospice, a patient goes into hospice care.

The hospice team is led by a physician and can include nurses, home health aides, religious personnel, one or more family members and volunteers. Hospice includes the patient and the patient’s family. The patient is provided treatment designed to relieve pain and other symptoms as much as possible without over-compromising the patient’s awareness. The patient and family members are given counseling for practical, psychological, spiritual and emotional issues.

Figure 1: Medicare Eligibility Requirements for Hospice

While most hospice patients are dying of cancer, hospice care can be made available for any terminal patient. For instance, hospice care can be provided for patients with advanced Alzheimer’s disease, end stage diabetes, or end-stage HIV where the dying process might be much more prolonged than that of a terminally ill cancer patient.

The decision to enter hospice care must be made by the patient, or the patient’s legally designated representative if the patient is unable to decide for herself. When a patient is in a physician’s care, the physician will be consulted to ensure that he agrees with the decision for hospice care for the patient. If the patient’s physician believes he should continue to treat or monitor the patient, he can do so and the arrangements will be made prior to the transfer of responsibility for the patient’s care to hospice.

The idea is to let the patient die comfortably, at home or in a home-like setting — perhaps a nursing facility — rather than in a hospital or without comfort, in the hands of her family. The particular needs of the patient and family are essential elements in the development of the treatment plan. Based on the treatment plan the hospice team endeavors to provide all the support the patient and family need.

HOW IS HOSPICE UNIQUE?

Hospice is not a hospital. It is not a doctor’s office. It sometimes takes place in a nursing home, but it is not a nursing home. How does hospice differ from these other settings with which most physicians are familiar?

Purpose
The objective of hospice care is to provide comfort and support for the dying patient and the patient’s family.

Unlike a hospital or doctor’s office, hospice is not devoted to helping the patient “get better.” Its focus is on the quality of life rather than the quantity, and death is accepted as a normal process. Contrary to some misconceptions, hospice is not designed to accelerate the dying process. Neither does it seek to postpone death.

Physicians practicing outside of hospice care focus on their patients. Family members are more and more often included in consultations, but they are more tolerated than encouraged in most situations, and they are not a focus of care. Hospice takes a completely different path, including the patient’s family members as part of the decision-making process, understanding that they too need care, and working closely with them and for them throughout the dying process.

Hospice is not a “death sentence.” If a patient improves while in hospice care, she can choose to be returned to further treatment of her disease or to her pre-hospice day-to-day life.

The medical care provided for patients in hospice includes the full range of pain management techniques. Hospice intends to manage the physical pain of the patient so she is as comfortable and aware as possible, and the success rate is very high.⁸ In addition, hospice intends to help the patient and the family address their psychological, emotional, and spiritual pain.

Service
In addition to being covered by Medicare, hospice is also covered by Medicaid in 39 states. Following are the basic requirements a patient must meet in order to receive hospice benefits under Federal Medicaid legislation:

“The hospice service benefit is an optional benefit which States may choose to make available under the Medicaid program. The purpose of the hospice benefit is to provide for the palliation or management of the terminal illness and related conditions. Under Federal Guidelines, the hospice benefit is available to individuals who have been certified by a physician to be terminally ill. An individual is considered to be terminally ill if he/she has a medical prognosis that his or her life expectancy is 6 months or less. Individuals who meet these requirements can elect the Medicaid hospice benefit if provided by the State.

In order to receive payment under Medicaid, a hospice patient must meet the Medicare conditions of participation applicable to hospices and have a valid provider agreement. The provision of care is generally in the home to avoid an institutional setting and to improve the individual's quality of life until he or she dies. However, individuals eligible for Medicaid may reside in a nursing facility (NF) and receive hospice care in that setting.

In order to be covered, a plan of care must be established before services are provided. The following are covered hospice services: nursing care; medical social services; physicians' services; counseling services; home health aide; medical appliances and supplies, including drugs and biologicals; and physical and occupational therapy. In general, the services must be related to the palliation or management of the patient's terminal illness, symptom control, or to enable the individual to maintain activities of daily living and basic functional skills.

Additionally, there are other services that may be provided under the hospice benefit, subject to special coverage requirements. Continuous home care may be provided in a period of crisis. This consists of primarily nursing care to achieve palliation or management of acute medical symptoms. A minimum of 8 hours of care must be provided during a 24-hour day.

Also, short-term, inpatient care is covered, as long as it is provided in a participating hospice unit or a participating hospital, or NF that additionally meets hospice standards. Services provided in an inpatient setting must conform to the written plan of care. General inpatient care may be required for procedures necessary for pain control or acute or chronic symptom management, which cannot be provided in other settings. Respite care is short-term, inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual at home. It may only be provided on an occasional basis and may not be reimbursed for more than 5 days at a time. Respite care may not be provided when the hospice patient is a nursing home resident.”

Everything covered under a hospice plan is to be designed and implemented to help reduce the intensity of the terminal illness and related conditions for the patient. Curative medicines and procedures such as rehabilitative therapies are not covered and will not be provided by hospice.

A common misconception among physicians working outside of hospice is that a patient can only receive hospice care for six months or less. In fact, some patients receive funded hospice care for years. The key criteria are that the patient has been diagnosed with a terminal illness and that it is believed that she has six months or less to live. If the patient stays alive longer than 6 months, she may be re-certified, and there is no limit to the number of re-certifications a patient might receive.

Physicians practicing outside of hospice care will usually see a hospitalized patient once a day at most and other patients on an occasional basis – perhaps once a month – even if they have a terminal illness. In hospice care the physician in charge monitors the patient on a daily basis, usually through the round-the-clock, hands-on work of nurses and others who operate under his treatment plan, his direction, and his review.

In addition to fully accredited and specially trained nurses, the hospice team includes:

• trained home health aides who help with the personal care of the patient
• social workers who help with:
  • financial and other practical issues
  • emotional support for the patient and family
  • counseling for the patient and family
  • communication with volunteers
  • communication with other support services
  • communication between the family and community agencies
  • bereavement follow-up for the family
• a chaplain of the appropriate faith, as needed, who can:
  • provide spiritual support for the patient and family
  • help with communication with the family’s religious community
  • assist the family with plans for a memorial service and/or funeral
• one or more family members
• volunteers

Beyond the team members mentioned above hospice provides access to physical therapists, speech therapists, occupational therapists, music therapists, art therapists, massage therapists and nutritionists. And when the family needs a break, hospice provides “respite care” for 5 days at a time – complete care for the patient so the family member(s) can get re-energized for the often difficult work of caring for the dying.

While working to help a patient “get better” a primary care physician will, as appropriate, take historical information, do a physical examination, provide a diagnosis, order tests, prescribe medicine, provide referrals to specialists, and schedule appropriate follow-up. The physician and his staff either provide the services themselves or order them from others. In hospice the constellation of services is brought to bear for the patient by a team as part of the treatment plan that is managed by one physician and provided by one entity.

PLACING A PATIENT IN HOSPICE CARE

Offering a patient information about hospice care as an option may be done by any physician when he believes that it would benefit his patient. The conditions that would make such communication appropriate would include:

1. a belief that the patient has a terminal condition that will probably lead to her death within 6 months,
2. a belief that there are no more curative measures that should be provided for the patient, and
3. a belief that the patient might be better served through hospice care.

The first of these criteria involves scientific, objective judgment, but the other two can be difficult for many physicians. Having chosen a career devoted to helping people “get better” a physician may be reluctant to see that the patient will probably not benefit from further treatment and could be better off in hospice care.

Figure 2: Recommended Steps for Discussing Hospice Care

In an article in the March 2002 Journal of Clinical Oncology, under the banner “The Art of Oncology: When the Tumor is Not the Target,” there is a very informative article entitled “Discussing Hospice Care,” written by Charles F. von Gunten, MD⁹. In it Dr. von Gunten recommends steps for discussing hospice with a patient, which is included as Figure 2. You can access the entire article at http://www.jco.org/cgi/content/full/20/5/1419.

The patient, or a legally designated representative, must make the decision to transfer from curative care to hospice care. The patient’s physician or his team can provide information about hospice care, e.g., what it is, a list of available hospice providers, how hospice service might be paid for, and the alternatives to hospice care. Offering such information is a service more physicians should provide more often as part of their commitment to deliver the best quality of care for each patient. As indicated in “The Hospice Medicaid Education Project, Overview,” a 1996 Gallup Poll revealed that 90% of Americans faced with a life-threatening illness would prefer to be cared for and die at home, free of pain, their symptoms under control, surrounded by their loved ones.”¹⁰ Given the range of services and health care professionals included in hospice care, its inclusion in most health care benefits packages, and the likelihood that a terminal patient would opt for it if she knew about it, communication about hospice care should probably be provided for every terminal patient.

What are the points that should be covered in such communication? Each physician will have to decide for himself based on the circumstances of each particular case, but the following list should be helpful.

1. There is nothing more we can do to help you get better.
2. You might benefit from hospice care, and we want you to know a little about it so you can make an informed decision.
3. If you decide to enter hospice care you will be treated by a team of health care professionals who specialize in situations like yours. Their job is to provide as much physical comfort for you as possible and to provide support for your family, including spiritual and emotional support.
4. A specially trained physician will lead the team. A treatment plan will be developed for your particular situation. You and your family will be involved in all decision-making.
5. Your pain and other symptoms will be addressed with the latest medicines and techniques.
6. There will be specially trained nurses, specially trained home-health aides, clergy and others who will be available 24 hours a day, 7 days a week.
7. Your family can have an important role in the care giving if that’s how you decide to proceed. If circumstances call for periods of relief for your family, respite care will be provided so they can get some time off.
8. Hospice care is not intended to either hasten or delay your dying. It is intended to ensure your comfort and dignity as you leave this world behind.
9. Hospice care will be provided for you wherever you are — at home, in a hospital, in a nursing facility, in a rehabilitation unit — wherever your treatment requires that you should be.
10. Hospice services are usually covered by insurance plans, Medicaid and Medicare, and the hospice team will help you manage insurance and other practical matters associated with your situation. You’ll want to know what your coverage will be before you make your decision.
11. The hospice team will coordinate services and care with our team as needed. (Note: This may or may not be appropriate and will need to be decided on a case-by-case basis.)
12. You will not be given any further curative care while in hospice. If your condition should improve — for example, if your illness should go into spontaneous remission — you can leave hospice care and return to our care.
13. When necessary, the hospice team will provide bereavement support for your family and friends.
14. If you wish, we can provide you with a list of hospice services and organizations. (A list that can be reproduced and distributed is included in Appendix L, Resources.)

A list of questions the patient and/or patient caregivers should ask when deciding on home care or a hospice organization has been compiled by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). The list is included as Appendix B.

If the patient’s non-hospice physician wishes to stay involved in the patient’s care he may do so. For example, a family physician or endocrinologist might want to continue to monitor a diabetic’s insulin needs while she is in hospice. The key for the patient is that everyone – the hospice physician in charge, the hospice team, the patient, the patient’s family and the referring physician all know who is responsible for what. This common knowledge will help prevent communication errors and unneeded stress for everyone involved.

In such cases, for instance under Medicare, the services of the patient's attending physician (or Nurse Practitioner, or Physician Assistant), if he is not an employee of the hospice or providing services under arrangement with the hospice, are not considered hospice services. His services are paid according to the Medicare Part B physician fee schedule and are billed directly by the physician to the appropriate Medicare Part B carrier.¹¹

There should be a specific moment in time when the responsibility for the patient’s care is transferred from the attending or treating physician to hospice, and it is best for all parties if this transfer is commemorated in a document signed and dated by all the parties. This event will serve the patient and his family as a clarification that the hospice provider is now in charge of care, it will affirm the patient’s role as the decision-maker, and it will prevent any claims of abandonment or negligence against the physician transferring care to the hospice provider. A sample document is provided as Appendix C.

Once the transfer of responsibility to hospice has been made, copies of the patient’s relevant records will be provided to the hospice team. From that point forward the hospice team will be responsible for proper documentation in the patient’s record.

SUMMARY

Most physicians will be given an opportunity to help a patient with a terminal illness. These opportunities will arise more often as our population ages. What can the physician do? He has several options,

1. continue to provide treatment and counsel as the primary care giver,
2. send the patient to a hospital,
3. refer the patient into the care of another physician,
4. send the patient home with a prescription for analgesics and other necessary medications,
5. give the patient information about hospice.

Each patient’s case will require its own set of decisions. There is no one “right” protocol that will fit all situations.

Perhaps the right approach for each situation can be found if the physician asks himself, “What if the patient were my mother or my sibling? What would I want done for my mother or brother?” In many cases, given a basic understanding about hospice, the choice will be to offer the patient information about hospice.

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