Hospice Patients Alliance: Consumer Advocacy

Clinging to the Original Hospice Mission - Part Three:

Standards of Clinical Practice

Adhering to accepted standards of care for clinical practice is vital to all aspects of health care delivery, end-of-life care included. Whether staff is determining how to administer a medication, how to advise patients and their families about care, when to start or stop an intervention, etc., following the accepted standards1 protects the patients and family; it makes it possible for the patients and their families to trust in "the system." Trust is an integral part of the health care system. Patients and families trust that staff will intervene to assure the patient's best interests without becoming a victim of any "agenda" that has nothing to do with a patient's rights or choice about his own care.

Expanded Role for Nurse = Minimal Physician Involvement

In hospice, there is an extremely expanded role in practice for the nurse, who consults with a physician rarely. The widespread and expected use of standing orders in hospice decreases physician consultation. The extreme rarity of physician visits to the bedside of terminally ill patients in their own home prevents the physician from confirming the status of the patient through his or her own assessment. A physician working with a hospice relies upon the reported assessment of the nurse and then makes his orders.

The public is not aware of the minimal physician involvement in most hospice cases. Although the standards require reqular Interdisciplinary Team meetings which include the hospice medical director, physicians have been known to be reading or writing during meetings and not listening to the discussions going on in the meetings which discuss an individual patient's care. Attending physicians may simply "rubber stamp" whatever the nurse requests in order to decrease his or her involvement in the case, thereby reducing time expended on a patient who is going to die anyway.

Some physicians psychologically "wash their hands" of the patient and merely write the orders as a formality. While some attending physicians are extremely involved in their hospice patients' cases, most physicians have minimal involvement. The lack of physician involvement in most situations is hidden from the public, however every hospice nurse knows that this is the way it works in many cases.

Attending physicians are mostly involved in their ongoing medical practice, seeing patients or performing hospital rounds. Some physicians may not wish to be too involved in their hospice cases since they mistakenly (but humanly) view a terminal illness as their failure to cure the disease in the first place. They may also have a difficult time dealing with death, dying and the emotion turmoil that surrounds the end-of-life care arena. Physicians are human, and their emotions may affect their involvement or lack of involvement in these cases.

The U.S. hospice system was created by Congress to reduce costs to Medicare, Medicaid and private insurers; it envisions a decreased level of physician oversight and places great trust in the professional nursing staff. The safeguards built into the system demand that standards of practice be followed every step of the way. If symptoms are not well-managed or any other problems arise, then the nurse must consult with nursing supervisors and/or the physician for input, and this is done by many nurses.

The number of nurses involved in any one case may work to help resolve distressing symptoms since one nurse may have the clinical expertise to solve a problem while other nurses may not. Once a solution is provided by the nurse with superior clinical skills, other nurses may simply follow along with the determined plan of care. However, some nurses may not contact the physician as needed, but try to "wing it" on their own, sometimes with limited knowledge and clinical skill, sometimes with an agenda in mind. It only takes one nurse or other health care worker to derail the process. In health care, there is really no room for error. Life, health and death are literally in the hands of the health care worker; in hospice, these hands are most often the hands of the nurse.

Because there is an extremely expanded fairly independent role for the nurse working in hospice, and because there are some nurses who have an agenda to hasten death in the terminally ill, hospice administrators, boards of directors, nursing supervisors, physicians and the families of patients need to be vigilant to assure the ethical delivery of end-of-life care. A hospice administration that emphasizes and enforces ethical delivery of end-of-life care will have superior services.

We have seen that in some situations, failure to promptly treat infections in the terminally ill can hasten death.2 We have also seen that the premature removal of regular medications in the terminally ill can destabilize the patient and hasten death.3 There are numerous other ways that a patient's well-being may be harmed, often without the knowledge or permission of the patient and family. All of them involve transgressions of accepted standards of practice.

Adherence to Clinical Standards Emphasized in Health Care Training Schools

When students enter nursing or medical school, instructors make every effort to weed out any student who does not meet the standard for caring for patients. Students who score below 80 percent will be failed out of a course. Students who exhibit carelessness, poor judgment, lack of punctuality and who are not dependable are thrown out of school. Even students who are sick too often and miss too many days are thrown out, sometimes after only three days of absence. The reason for removing these students? Assuring top quality patient care in the health care system. Students are drilled in proper technique, clinical knowledge and encouraged to develop good clinical judgment: all for the well being of the patients to be cared for.

Medication Administration

Physicians and nurses learn about the five "rights" of medication administration: right patient, right drug, right dosage, right route, right time and interval between dosages. Take any one of these factors and modify it; you get a "medication error." Wrong patient getting a medication is obviously life-threatening in some circumstances. Giving the wrong medication to a patient is equally life-threatening in some circumstances. Wrong dosage, either too high or too low may threaten life, harm the patient or result in failure to successfully manage distressing symptoms. Wrong route can be fatal, harmful or result in faliure to successfully manage symptoms. Wrong timing can cause overdosage or inadequate medication to successfully manage symptoms, resulting in a pain or other symptom crisis. Giving the medication in too short an interval equals overdosage and may cause death, especially when strong narcotics are involved.

Liquid morphine is one of the most common medications used in hospice care. Standing orders for commonly used liquid morphine drops often include something like "give 5 to 20 milligrams (mg.) morphine PRN (as needed) every 2 to 4 hours. May titrate per protocol." (or a variation on that.) What such a standing order does is allow the nurse to vary the dosage dramatically without calling the physician. For example, the nurse could give 5 mg. of morphine once every four hours or longer. On the other hand, the nurse could give 20 mg. every two hours. What is the difference in dosage? If a patient gets the 5 mg. every four hours, that equals 30 mg. total in 24 hours. If the patient gets 20 mg. every two hours, that equals 120 mg. in 24 hours. The difference is drastic, and if the nurse increases the dosage without medical justification, or quicker than allowed by the standards of care for titrating (increasing) the dosage, harmful side-effects can result, especially respiratory depression and decrease in the blood pressure (both of which can be fatal).

Morphine (in the "instant release form" is normally metabolized within four hours, so it is usually given again in four hours. However, the large majority of hospice patients are elderly patients with compromised kidney and liver function. Due to decreased kidney and liver function, medications given to the elderly often linger longer in their system and act for a longer period of time. Giving morphine in intervals shorter than the time in which the patient can excrete the morphine and its by-products allows for a build up or overlapping of dosages; the patient may actually be experiencing twice or more of the dosage given.

One might say, " the patient is getting 5 mg. of morphine every four hours," but the patient has the equivalent of 10 or more mg. of morphine circulating in their system. For this reason, clinical assessment of the patient is mandatory and modification of the medication regimen is warranted when adverse effects are observed. Family and/or patient representative must be vigilant in not only observing the effects of medications upon their loved ones, but also trusting their instinct about what is going on. They need to learn as much as they can about all aspects of care and be realistic about what can be expected.

Families may not be able to objectively observe the changes occurring in their loved one. Families may not have the knowledge base to properly assess what is going on with their loved one. Distressing signs and symptoms which arise may be due to the actual dying process but also may be due to adverse effects from inappropriate medication administration or failure to provide the appropriate medication, treatment or intervention. Something as simple as raising the head of the bed or providing oxygen may be all a patient needs.

In other cases (of extremely low blood pressure, for example) simply moving the patient up in bed very quickly can cause instantaneous death. Failing to provide oxygen, keeping a patient flat when they need to have their head raised up, not assisting a patient to eat or drink (when they can absorb them), giving a patient food or fluid (when they can't absorb them), not responding to significant changes in the rate of breathing or blood pressure (when the patient is not actually actively dying) ... all of these violations (and many others) of the standards of care can result in premature death of the terminally ill. Failure to use emergency antidotes for narcotic overdosages can result in untimely deaths. In fact, most hospice nurses never use Narcan which can effectively relieve the adverse changes in patients who are overdosed with a narcotic. Most nurses fear that use of Narcan may result in a pain crisis by suddenly erasing the pain-relieving effects of the narcotics.4 This fear is unfounded and based upon lack of knowledge and practice in appropriate titration of Narcan.

Need for More Nurses and Better-Trained Nurses

There is a growing need for education within the nursing school and medical school environment, hospice staff training, continuing education and simply, more nurses. Due to the long-standing practice of many health care institutions to short-staff, overwork and in some cases, outright exploit their nursing staff, many nurses do not encourage others to enter the field. It is commonly known that even those nurses with great dedication may get "burned out" from working so hard for so long, that they can no longer provide care to the best of their ability. Many "burned out nurses" leave the field completely.

The nursing shortage is at crisis levels in the United States. Many hospitals, nursing homes and hospices simply cannot find enough nurses to staff the cases they have at the level which would adhere to the standards of care. In other words, there are not enough nurses practicing in the areas needed to meet the needs of the patients. Although the health care industry will loudly protest to the contrary, the problem is self-created by health care corporations which have systematically and routinely violated the rights of their staff, often blackballing the nurse who stands up for patient rights and the standards of care. The American Nurses Association has published numerous accounts of problems encountered by nurses in the field.

"75 percent of nurses surveyed feel the quality of nursing care at the facility in which they work has declined over the past two years, while 56 percent of nurses surveyed believe that the time they have available for patient care has decreased." "In addition, more than 40 percent of nurses surveyed said they would not feel comfortable having a family member or someone close to them be cared for in the facility in which they work. And over 54 percent of nurse respondents would not recommend their profession to their children or their friends."5

While the nursing shortage is at crisis levels in the general field of health care, the shortage in hospices is even more pronounced. There are only a limited number of nurses or physicians who feel comfortable working with the dying. Many nurses are simply either afraid or repulsed by the thought of working with the dying. They must confront their own mortality and the sometimes bleak reality which death presents. Those who overcome their initial pre-conceptions about working with the dying discover that the field offers one of the most rewarding work environments with great opportunity to see tangible results from one's interventions. By intervening with clinical expertise, the palliative care nurse is able to relieve suffering and bring peace to patients and their families.

When shortages exist within the nursing field, and especially within the hospice industry, the ability of hospice agencies to address the needs of all its patients may be hampered. Not only do hospice agencies have to deal with a general shortage of nurses, they also must struggle with the limited reimbursement provided by Medicare, Medicaid and/or private insurance companies. Working within these constraints, most hospices pay their nurses noticeably less than nurses with comparable training working in hospitals or even nursing homes.6 Problems are bound to arise and cause significant problems, even with the best of intentions on the part of the hospice agency and its staff.7

These factors further reduce the number of nurses willing to work in the field. Most nurses who work in the field do so out of great dedication and love for the patients they serve. One encouraging sign is the development of palliative care instruction in nursing and medical schools. As the years go by, more and more schools are including end-of-life care in the curriculum. Hopefully, this will result in more nurses entering palliative care as their career focus.

In health care, everything that is done, i.e., every "intervention," must be thought out and carried out to further the best interests of the patient. In every health care setting, the normal focus or concern is that interventions be carried out in a way that improves the patient's health and well-being. Concerns about cleanliness, sterile technique during certain procedures, and faithful implementation of a physician's order dominate most nurse's thought process as they go through their day. However, there are some hospice staff who misuse interventions with the consequence that a patient's death is hastened. This is in stark contrast with the dedicated hospice professional. The contrast is so complete, that many simply disbelieve that such intentional harm to a patient could ever be done, however the news accounts are full of stories about people eager to hasten the death of the severely disabled, chronically ill or even the terminally ill.

Failure to Follow Accepted Standards of Clinical Practice
May Result in Hastened Death/Euthanasia

While a failure to follow even one standard of care may result in imposing death on an unsuspecting patient, some right-to-die zealots actively encourage the concealment of their deeds by lying about imposing death on patients. Dr. Philip Nitschke recently advised others in his group:

"The best advice is to do it and say you didn't."8

Those who consciously set out to hasten death in a patient will intentionally violate accepted standards of practice, falsify the medical record to protect themselves from prosecution and seek to cover up the deed completely if possible. To say that there are "wolves dressed in sheep's clothing" is an understatement. There are even hospice board members who actively promote euthanasia, make sure that disabled patients are admitted into hospice for the express purpose of euthanizing non-terminal patients.9 Others seek to end the life of patients before the terminal illness claims their life.10

While there are numerous difficulties encountered by those working to provide quality end-of-life services, many hospice staff and agencies do their best to assure a death with dignity in its own natural time. The clinical standards of care along with accepted standards of ethics and morality are necessary ingredients to assure the future of ethical hospice and palliative care. While it is clear that there is a great need for increased utilization of hospice and palliative care services11, those working in the end-of-life arena must diligently work to preserve the ethical foundations of hospice while applying the clinical standards of care12 to successfully relieve distressing symptoms in the dying!

1 - See the federal regulations governing hospice care.
     also see the Hospice Patients Alliance Main Topics section
     for explanation of all the standards of care in hospice.

2 - See "Infections in the Terminally Ill"
     Also see: Failure of HMO to allow Antibiotic Treatment of Patient with Infection"

3 - See: Removal of Regular Medications.
     Also see listed point number 3 of:
     Poor, Elderly, Disabled Veteran Euthanized Against His Will"

4 - See: Failure of Hospice Staff to Use Narcan in Morphine Overdosage

5 - See: Nurses Concerned Over Working Conditions, Deline In Quality of Care, 2001 Press Release/ANA Survey Reveals

6 - See: Staffing shortage plagues hospices - Aging population strains resources
The Chicago Tribune, by Amanda Vogt, 10-03-01
".... The projected nursing shortage will coincide with nearly 50 percent of the population being age 55 or older ... "This cohort will be making end-of-life decisions, including demanding the right to die at home," ... "If we don't account for this group, we face mass warehousing of the elderly." Efforts to alleviate the hospice nursing shortage are complicated by two factors: low pay and the need for more experienced nurses. Hospice nurses earn 20 percent to 50 percent less than their colleagues in other fields, industry experts say. .... "

7 - See: Family Sues Hospice Over Son's Suffering
     USA Today, 8/19/01   ".... Sean Reynolds died nearly seven years ago.
     His was just one of about half a million deaths from cancer within the
     nation's hospices. But patient advocates say his was also among the
     many deaths that go horribly wrong each year in hospices that are
     struggling with nursing shortages, financial pressures and the same
     systemic problems that lead to medical errors. .... "

8 - See: A practical guide to suicide
     Sydney Morning Herald: 12/02/02 by Greg Roberts

9 - See: Terri Schiavo To Die In Attorney's "Death Factory"
     Also see: Life, death tug of war in Florida courtroom
     Family fighting husband's efforts to disconnect wife's feeding tube
      WorldNetDaily.com by Diana Lynne: 11/13/02

10 - See: "Terminal Sedation: Is it Good Palliative Care or Euthanasia? "

11 - See: Last Acts releases state by state report on End-of-Life Care

12 - See: Kuebler, K., Berry, P., & Heidrich, D (Eds.) (2001).
     End-of-Life Care Clinical Practice Guidelines for the Advanced Practice Nurse
     Philadelphia, PA: W.B. Saunders Co. available online
     from www.harcourthealth.com

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