Hospice Patients Alliance: Consumer Advocacy


When any individual seeks health care, he expects that the physicians, nurses, social workers and other professionals will provide the very best of care in accordance with the most modern standards in the health care industry. Whether it is surgery or medical management of a disease, the expectation never changes. Most people trust their physician and the nurses who care for them. They trust their counselors and therapists. Health care professionals are quite often perceived as quite dedicated individuals who do their very best in caring for their patients.

Hospice is no different from any other aspect of the health care industry in terms of the degree of competence and integrity that is expected by the general public. However, hospice patients and their families are less likely to know when they're being exploited, because it is less likely that they would know about the standards of care for end-of-life care. Even if they do know the standards, hospice patients and their families are less likely to complain, because of their fatigue, the overwhelming intensity of involvement in caring for their loved one (often around the clock), and their intense grief.

Physicians, nurses, social workers, professional counselors and therapists are licensed in each State to provide health care services. Each State has standards of care for all health care professionals, and each professional organization has published its own Code of Ethics and standards of care. Any licensed health care professional has a duty under the law to maintain professional competence, abide by the Code of Ethics, and actually provide care that meets the standards of care. Most health care professionals take pride in being competent at their work, staying up-to-date, and doing the best for their patient. There is a natural bond between health care professionals and their patients. Many will fight for their patients to protect the patients' interests. That is what patients expect and what they often receive.

However, with the changes in the health care industry, constantly rising costs of providing services, and stiff competition among health care agencies, hospitals, nursing homes, and hospices, the business of running a health care agency or hospice has taken over in terms of controlling what directives management gives to its staff. No longer can you safely assume that the agency or hospice will necessarily do what's right or according to the standard of care. Cutting corners has become commonplace in health care. This places terrible strain on the health care staff, who are pulled in mutually exclusive directions by their different obligations under their license and to their employer.

Health care professionals' first obligation under the law and their license is to the patient: to abide by the Code of Ethics for their profession, maintain professional competence and actually provide the care that meets the standards of care for their line of work. The second obligation health care professionals may feel heavily weighing on their shoulders is to their employer; if the employer directs the health care professional to violate the standards of care (in order to save the employer money), he or she must choose between pleasing the employer (and keeping a job) and doing what's right for the patient.

Physicians, nurses, social workers and others routinely confront these conflicting obligations and try to find a compromise between the two that is acceptable to both obligations. However, when the policy of the employer is clearly in violation of the standards, the health care professional must choose between right and wrong. There is no middle ground when health care fraud is directed and intentionally committed at the administrative level.

Hospice is fertile ground for health care fraud. There are many ways of exploiting the patients, families and the reimbursement source, whether Medicare, Medicaid, private insurance, or the patients and families own money. Federal investigators have struggled with attempting to stop the flood of health care fraud violations occurring. When the U.S. Office of Inspector General started its Fraud Hotline, they were flooded with thousands of calls about health care fraud. Some career criminals have even been quoted as saying that it was easier to make fortunes defrauding Medicare than through the sales of illegal drugs.

If you are receiving care from health care professionals, you can expect that most of them are very dedicated, and honest individuals. That does not mean that fraud might not occur. Some honest individuals do not have the courage to fight the system and simply decide to choose to ignore violations which are occurring, trying to stay uninvolved and just do their jobs. The financial incentive to the agency/health care institution is to commit fraud in order to bolster their bottom line. The financial incentive to the health care professional to keep quiet arises out of their need to keep their paycheck coming to support their family. Challenging one's employer's policies is a sure method of becoming very unpopular at work. Management does not look favorably on employees who expose their white-collar crime! Even co-employees may avoid a health care professional who makes a complaint against the employer...they simply don't want to have their own jobs threatened.

For the hospice patient and families, you can expect that some of the physicians, nurses, social workers or other staff will definitely speak up on your behalf if they think that improper decisions regarding health care occurring. The best thing you can do to help these health care professionals is to listen closely to what they may say to you. Remember their comments if any problem arises, if you are having difficulty getting proper services. By listening to what some of the hospice staff may tell you, you can glean extremely important clues to what you should be receiving, but may not be receiving...or you may learn of problems which you did not even know existed.

Remember, if you don't know the standards in hospice, how can you know when you're being exploited? If you determine that any of the services you are receiving are inadequate or improper, your complaint directly made to the hospice management will be much more powerful than any complaint made by an employee. If you have questions about the care being provided, ask one of the staff who you seem to have a stronger, closer relationship, who you trust. If you're still unsure, you can contact other hospices, health care professionals you may know or call us at the Hospice Patients Alliance.

While all health care professionals are required to be advocates for the patients under their care, the reality is that some health care professionals choose to look the other way and keep quiet, to save their own job. Health care fraud, under-serving patients and outright violations of standards of care does occur. You can help stop it from continuing by listening closely to the staff you meet, by learning as much as you can about the standards of care (that's one of the reasons for the Hospice Patients Alliance...to help inform you and protect you), read the contracts and literature provided by the hospice, and be willing to ask probing questions of the hospice staff who work with you. Some hospice staff do not know the full meaning of the standards of care and have been misled by their hospice employers. If you have doubts about what you are told, look up the law for yourself in the Section on Federal Laws Governing Hospice: the Uniform Standards of Care. We will be happy to explain the standards to you if you call.

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