Palliative and Hospice Care In the United States Jean Root, DO Hello. My name is Jean Root. I am an Osteopathic Physician who specializes in Geriatrics, or care of the elderly. I teach and practice Geriatric Medicine at the University of Oklahoma in Tulsa, Oklahoma. I graduated from the Oklahoma State University College of Osteopathic Medicine in 1982. Later, in 1992, I obtained my Master of Public Health Degree from the University of Oklahoma in Tulsa. I have certifications in Geriatric Medicine, Palliative and Hospice Medicine and Medical Direction. Medical Directors give medical advice regarding the administrative aspects of medical care in hospitals, nursing homes and hospices. They help to establish policies and procedures and work to improve quality of care. The word palliative means to make less severe without curing. All of us practice palliation when we treat conditions we cannot cure. Chronic health conditions are most common among the elderly. Therefore, much of the practice of Geriatric Medicine involves palliative treatment and management. Many of the chronic conditions we treat progress to a terminal phase. In the U.S., there is not a systematic method of providing palliative care, but hospice is one of the strategies we use to provide terminal care. Medicare is universal health insurance for those over 65 years of age and the chronically disabled. From its inception, the Medicare Hospice benefit was designed to be community and home based rather than hospital or place based. With a few exceptions, Hospices in the U.S. provide services wherever the patient lives. Their offices house administrative staff and provide a place for nurses and other team members to work when they are not conducting patient visits. I believe most hospices in Russia are based on the British model of in-patient care with some home care services also.
When surveyed, most people say that they would prefer to die at home surrounded by those they love rather than die in an institution surrounded by medical personnel. They do not fear dying so much as they fear suffering and going through a prolonged period of agony. 1. Patient and family choices are followed whenever possible. 2. Patients usually don t exist in isolation. Sometimes the family is the nursing home staff who care for the patient. 3. More details later. 4. See below. 5. Quality of life means different things to different people so every effort is made to meet the expressed needs of the patient/family. 6. See below 7. See below 8. Someone is always available to visit or speak with the patient/family. 9. See below 10. Bereavement care is required for 13 months after the patient s death 11. Hospice helps to coordinate many different types of services/medical equipment/companionship and other needs. 12. All hospice programs have ongoing quality improvement programs. Although I work with Odyssey Hospice, all Hospice companies that provide services for Medicare patients must adhere to the same set of Federal Rules and Regulations and they receive essentially the same reimbursement rates throughout the country. All Medicare certified Hospices have an obligation to make a specific array of services available to their patients. All medications related to the terminal diagnosis, durable medical equipment such as hospital beds and oxygen, and supplies such as wound care products must be provided if needed by individual patients. They may not charge extra for these items but must supply them from their allotted reimbursement. If Hospice patients are still able to do so, they may leave their home to grocery shop, attend family gatherings and take care of other
business. A few Hospice patients are still able to work if their symptoms are well managed. I find that most people want an open discussion of their illness and prognosis. There are some cultural differences among ethnic groups, however, that make discussion of death/dying a taboo topic. Some people believe that mentioning death or dying will actually bring it about. It is very difficult to provide good terminal care unless the patient and family can face the reality of the illness. Some families worry that the patient will lose hope if given a terminal diagnosis and would rather continue to have them seek a possible cure. At times, patients already know that they are not going to get better but don t want to upset or insult their doctor. It may be a relief to them for the doctor to introduce the topic. The main advantage of Hospice is that it signals a change in the goals of care from curative to palliative. Sometimes families are already aware of the end stage of an illness and can help prepare the patient. At other times, the patient has to help the family with acceptance. Patients are often afraid of upsetting their family, so it is important for the doctors and nurses to be able to discuss the situation so that families can work through what is about to happen. Each category of care is reimbursed by Medicare at a different rate. Routine Home Care is the most common and occurs wherever the patient lives; that may be a private residence or a nursing home or assisted living facility. Continuous Care occurs when a patient is in some type of crisis (pain or difficult breathing) or is actively dying. Care must be approved by the Medical Director and initiated by a Registered Nurse. Continuous Care may continue for up to 72 hours with Hospice personnel present at all times. Respite Care is available for families/caregivers who need a break from caregiving duties or need to be away to attend to other family
matters. Usually, the patient enters a nursing home briefly (up to 5 days), then returns to their previous setting. Just as Medicare certified Hospices must provide a standard array of services, every Hospice team is composed of the same type of personnel on the Interdisciplinary Team: physician, nurse, nurse aides, social worker, spiritual care coordinator, volunteers, medical director(s), and bereavement coordinator. Other health care workers such as physical therapy, occupational therapy and speech therapy are consulted based on an individual s need. The patient may keep his/her own physician to direct their terminal care. Patient Care Managers are Registered Nurses who supervise practical nurses and nurse aides. Social Workers deal with the many financial and family issues that arise from an individual going through the dying process. Spiritual Care Coordinators are usually clergy persons, but they focus on spiritual needs at the end of life rather and do not try to convert patients to their religion. Volunteers sit with patients to provide companionship, read to them, shop, cook and do other chores that they may not be able to do for themselves any longer. The patient s personal physician makes the referral to Hospice and the Hospice Medical Director reviews the case to determine that Hospice eligibility criteria is met. If the patient s personal physician does not want to continue to manage the terminal phase, they may turn the case over to the Hospice Physician. I have provided you with some handouts that show admission criteria for various kinds of terminal conditions. Hospice goes far beyond cancer care and recognizes that there are many terminal conditions that require pain and symptom management in the end stage. In each case the Medical Director must certify the eligibility of the individual to receive the Medicare Hospice Benefit and must also recertify them for specified benefit periods. Not all cases meet the strict criteria for single disease conditions but, in most cases, the patient will have multiple co-morbid conditions such as diabetes, heart failure, chronic lung disease and renal failure
along with their primary diagnosis that are likely to shorten their life span and support their eligibility. Hospice admission usually drastically reduces the necessity to do lab testing and X-rays, although it may be necessary to do certain basic tests such as blood counts and urinalyses. Although not common, persons may undergo radiation therapy and surgery if the intended outcome is palliation rather than cure. Most hospices use a formulary to try to manage medication costs but exceptions can be made at the request of the patient s physician. Decisions about feeding at end of life are among the most problematic for patients/families and health care providers. Placement of an artificial feeding tube is commonplace in the U.S. Although use of a feeding tube does not exclude someone from Hospice Admission, their use is discouraged. Research studies about artificial feeding have shown that it does not prolong life and may actually shorten it because of complications. Usually, terminally ill patients are not eating because they are not hungry and are not able to utilize the food they take in. Families worry about the patient starving to death but in reality they are dying of their illness, not of starvation. Another issue that we very commonly have to address is the use of intravenous fluids. There are occasionally situations when someone needs rehydration after a bout of acute illness, but for the most part, I.V. fluids pose more of a burden than a benefit in dying patients. A thorough discussion of pain management is beyond the scope of this talk, but I will mention some of the general principles that we follow. The study of pain and pain management has only recently been taught and discussed in American medical schools. Many myths and misunderstandings are common among practicing physicians, patients and families. Physicians are somewhat reluctant to prescribe
narcotics and may also find resistance from patients and families. Frequently, the primary care physician will request that the Hospice physician take care of the pain management aspect of the case. By mouth is the preferred route of administration, but Hospices make use of compounding pharmacies to prepare alternative delivery methods such as patches, gels, rectal suppositories, etc. Hospice patients usually have chronic pain and get more effective relief if they are dosed on a routine basis rather than waiting until the pain gets severe. There is no pre-determined dose of medication for any given patient. It must be based on individual need. There is no ceiling dose of opioids; therefore they may be titrated to effect. Sometimes cancer patients take thousands of milligrams of morphine a day and remain alert and functional. Adjuvant medications include corticosteroids for swelling, non steroidal anti-inflammatories for bone/muscle pain and inflammation, anti-depressants, laxatives and others that help resolve painful conditions. During the final stage of life, we typically see Two Roads to Death or what we refer to as active dying. This is when the skills of the Hospice team are crucial. Many different types of symptoms must be managed to allow for a peaceful and comfortable death. I cannot present a thorough discussion of terminal restlessness because of time constraints. Maybe that will happen on another visit. I recently had to discharge a 100 year old patient for extended prognosis because she was admitted for adult failure to thrive. After a long period of progressive weight loss and decline, she began eating and gaining weight. She no longer met eligibility criteria. Specialization in Hospice and Palliative Medicine is in its infancy. There are many organizations in the United States that promote and further good end of life care. The American Board of Hospice and Palliative Medicine is the certifying organization for physicians. At present, an individual physician can pursue a Palliative Medicine
Fellowship after their Residency training, or can follow a clinical practice pathway to become eligible to sit for the Board Examination. The AAHPM journal is one of many publications now available for those who wish to add to their knowledge base or conduct research on Palliative Medicine.