Community Services
Hospice & palliative care | home health care | evaluating agencies | other services (last update 12/2004)
A bewildering array of services exists in some communities and only a few services in other communities. The services to use vary according to the patient/family needs and the particulars of what each service offers. Managed care systems exert enormous influence on services, medications, treatments, and other aspects of care. The book, Outsmarting Managed Care (Times Books/Random House) by B. A. Barron, MD (former Senior Medical Director, Empire Blue Cross/Blue Shield) is highly recommended. It is available at Amazon.com, Barnes & Noble.com, and other sources.
Among the services that might be used are hospice, American Cancer Society (or other disease-specific organizations, e.g., American Heart Association, Alzheimer's Association, etc.), one's church or synagogue, private duty nursing services, various support groups, and others. The American Lung Association may be helpful for patients with lung cancer. Do not expect every organization to be helpful. Remember that to many service providers - most home health care agencies and hospice programs, for example, each patient is a source of revenue. So once again, the patient and family must understand and explore the situation rather than blindly follow what someone else says is best.
When there is more than one source for a service, the different sources should be compared in terms of what they offer, the way in which it is offered, and the cost. Of course most services present their best face to potential customers. Brochures are a product of marketing and have no relation to clinical quality! Services and ways to compare them are discussed below.
Hospice and Palliative Care Services
A hospice is a home care or inpatient agency or facility (or both home care and inpatient) that specializes in caring for patients with terminal illness. Palliative care is care directed to relief (or palliation) of symptoms rather than or along with cure. For brevity's sake we will use the term hospice henceforth. Hospice staff should have specialized training in symptom management and other aspects of terminal care. Most hospices have services that are similar at least in description. Core staff and services usually include nurses, physicians, home health aides, chaplains, nutritionists, social workers, psychologists, volunteers, physical and occupational therapists, and bereavement services. Nursing service is on-call 24 hours, seven days/week.
A Brief History of Hospice The word hospice is derived from the Latin, hospes, the root word for hospitium, a place of hospitality. Originally places of rest for travelers and pilgrims during the Middle Ages, hospitia evolved into hospitals for the sick and hospices for the dying. As the Crusades and widespread pilgrimages ended, most hospices disappeared until the late-19th Century. In the late 1800s, the Irish Sisters of Charity established several hospices specifically for poor people who were dying. Then in the 1950s and 60s, Dr. (later Dame) Cicely Saunders was instrumental in developing modern concepts of symptom control at St. Joseph's Hospice and also St. Christopher's Hospice. In particular Saunders instituted the concept of giving medications for symptom control around the clock. She also spoke with clarity to the central role of religion in the comprehensive care of people with terminal illness. Applying the words of Jesus Christ, "watch with me," to the care of all patients, she brought great humanity and spirituality to hospice. At about the same time as Saunders was doing her work in the United Kingdom, Dr. Elisabeth Kübler-Ross was bringing dying and death out of the closet in the United States. Based on her work at Cook County Hospital in Chicago, Kübler-Ross wrote the seminal work, On Death and Dying. This groundbreaking work, along with consumer demand for greater humanity in health care, was pivotal in the early development of hospice in the U.S.. The first hospices in the U.S. were nonprofit efforts by dedicated volunteers and professionals. Gradually, with Medicare reimbursement (and later private insurance coverage) available, for-profit hospice companies became dominant. It should be noted that at least among staff actually serving patients, the level of dedication remains high. |
It is unfortunate that hospice referrals are usually made in the last month or weeks of life when the patient is very ill, symptoms are severe, and the family exhausted. Late referrals to hospice are a mistake. It is very helpful to involve hospice in care before the patient is extremely ill, before symptoms are a major problem, and before the family is exhausted. Early involvement results in at least some problems being prevented. This might be the most important sentence in this site: To get the maximum benefit from hospice, insist on an early referral from the physician or call hospice programs yourself.
General Principles and Philosophy of Hospice and Palliative Care
Hospice care is generally broader in scope than palliative care, but both hospice and palliative care share these fundamental principles and philosophy:
The central issue in hospice care is the skill and commitment of the staff in managing symptoms. Staff should also be committed to supporting patient and family and acting as an advocate for them. The amount and variety of services is secondary to these qualities. Some hospice programs are nonprofit and some are for-profit. Whether a program is nonprofit or for-profit does not necessarily affect the quality of care or dedication of staff; and in some cases, has nothing to do with the willingness to provide services at no cost to patient.
Payment for services can be through Medicare, Medicaid (in some states), private insurance, health maintenance organizations, and private pay. United Way and other private charities pay for services in some programs; and in some cases, the agency itself takes on some cases at no charge to the patient. Depending on the payment source, all services and equipment, including medications, is covered. Most American hospice programs are oriented to home care. However, most also have arrangements with acute care hospitals or skilled nursing facilities for their patients to receive inpatient care if needed. Some also have agreements with nursing homes or long-term care facilities.
In most cases, short-term inpatient care is best provided in acute care hospitals or skilled nursing facilities that are associated with acute care hospitals. This is because sophisticated tests may be beneficial to a particular patient, regardless of terminal status. Some testing, especially invasive or painful testing in later stages of disease may be inappropriate; but to not have testing capability is not in the patient's best interest. To locate hospice programs, talk with your hospital discharge planning or social services department, doctor's office, look in the yellow pages under "Hospices," or contact the National Hospice and Palliative Care Organization (NHPCO). The toll free number of the NHPCO is 1.800.658.8898. Their web site URL is http://www.nho.org/
There are home care agencies in every part of America, including most rural areas. This is due, in large part, to significant profits in the industry. The proliferation of these agencies has resulted, in some cases, in problems of low quality care and poorly qualified staff. There has been a shakeout in the industry in recent years and many programs have folded. Some home health care agencies have excellent hospice teams, while others have hospice teams in name only. Visiting Nurse Associations tend to have quality hospice teams.
As with freestanding hospice programs, the central issue is the skill and commitment of the staff in managing symptoms. Commitment to supporting the patient and family and acting as an advocate for them is also important.
Basic Home Care Hospice Services and Pertinent Questions to Ask
Ways to compare services are listed below, followed by discussion of basic hospice and palliative care services along with questions one might ask to evaluate services.
Basic hospice and palliative care services along with questions one might ask to evaluate services
Skilled nursing: What percent are RNs? Masters-prepared? Certified in hospice nursing (CRNH)? Are there limits on the number of visits/week?
Hospice physician: Does the hospice physician make home visits? What is the average number of home visits from the physician for each patient (expect only one or two)? Does the hospice physician contact the patient's physician? How often does that happen? How much specialized training in hospice care?
Home health aide: Do home health aides participate in hospice team meetings? What limitations are there on frequency and length of visits?
Social work: What percent are masters-prepared? ACSW? Do social workers focus on referral or do they provide counseling and explain and help fill out forms, make contact with other service providers, and similar services?
Chaplain: Do focus on referral or do they provide counseling, work with patients and families, or make contact with the patient's clergy when needed? What limits are there on chaplain services. What denominations are represented?
Inpatient services and agreements: Who provides inpatient care? What are the limits on hospitalization? Are inpatient beds dedicated to hospice or are they scattered? How does the home care program communicate with the inpatient program? What specialized hospice training do inpatient staff have?
Accreditation and certification (not a service, but relevant questions): Who accredits the program? National Hospice and Palliative Care Organization? Joint Commission? Medicare certified? Other certifications?
The above list of questions applies also to home health care agencies. To locate home health agencies, talk with your hospital discharge planning or social services department, doctor's office, or look in the yellow pages under "Home Health Services."
American Cancer Society
The American Cancer Society (ACS) is a national organization with numerous state and local chapters. While ACS publications are available from any chapter, the services and the way in which they are provided may vary. Transportation to some therapy is provided by some chapters, some equipment is available on loan, and supplies such as eggcrate mattresses, comfort pillows, sheepskins, room deodorant, and dressings are often available. As with all other aspects of care, it is sometimes necessary to ask different people about services. For patients with lung cancer, compare what is available from ACS with the American Lung Association. The ACS toll-free number is 1.800.227.2345 and their URL is http://www.cancer.org/.
Churches and Synagogues
Once again, a common assumption is that churches and synagogues know what to do when a member is terminally ill; and that clergy are able to counsel and be supportive. Sometimes the assumption is correct and sometimes it is incorrect. It is not uncommon for the patient and family to just expect others to know (1) that a family member is ill and (2) what is needed. Often, churches and clergy need only to be told that someone is sick; and at other times some assistance or direction is needed to help them understand how to help. Thus a specific request for regular meals, weekly visits by clergy or church school class, or for other help is far more productive than simply informing clergy or office staff that a family member is sick.
Many churches and synagogues have a lay ministry or pastoral care program through which members are trained to counsel with, and otherwise support members who are having difficulties of one kind or another. Although "trained," these lay ministers may also need some specific direction on what to do. Most are able to sit and talk with the patient, but may not think to offer to help with specifics such as filing insurance papers, reviewing hospital bills, taking out the trash every other day, or whatever else needs doing.
See the list of "typical tasks" in the chapter on family. This list offers many possibilities for church involvement, especially of the church school class or other group within the church. Many people who otherwise would be of little help are very helpful once they know what the patient and family need and feel they can do the job. A men's group, for example, is likely to be happy to do yard work on a weekly basis if asked. Left to their own devices, they probably would not think to offer the help; and usually are relieved to be receive a specific doable request. That's just the way we are.
Spiritual care is discussed in the section on individual needs. With spiritual care as well as other assistance, clergy may need help in understanding what to do. One might request prayers, reading from the Bible, communion, regular visits from several choir members, and so on. Do not be reluctant to voice needs and requests to clergy or anyone else.
Private Duty Nursing and Sitter Services
Many services exist and the quality varies tremendously from very good to very poor. It is absolutely essential that private duty personnel be well-monitored by family in addition to whatever supervision is furnished by the agency. Any unease with personnel should be acted on quickly.
Like others who work in health care, private duty personnel sometimes operate under misconceptions about terminal illness. To ensure that the care given conforms to accepted principles of terminal care, family or patient should talk with the personnel who provide the care to clarify and get agreement on how and what care will be given - especially with respect to symptom control.
The key to a good experience with private duty agencies is (1) to choose a reputable agency and (2) monitor the care given. The key to a good experience with hiring an individual independently is to be willing to (1) conduct a lengthy search for the right person, (2) monitor the care given, and (3) quickly replace a person with whom one is unhappy. The search is often discouraging, but persistence pays off. There are some lovely people in this work who seek first to serve.
Support Groups
There is a support group of some kind for virtually every disease and situation. Most hospitals, churches and synagogues, and disease associations (Alzheimer's, etc.) have at least one group that meets regularly or in a repeating series of planned meetings. These groups usually function to provide information and emotional support to those who attend. Many people are unable to access support groups because there is seldom provision for anyone to stay with the patient.
One of the more common groups at churches is focused on bereavement. People who have lost a loved one recently or in the past often find these groups very helpful. See the chapter on grief.