Palliative care in the acute hospital setting.
Abstract: Palliative care, associated with the hospice movement, has achieved wide acceptance in many countries. Its focus has been care of cancer patients and more recently, those with AIDS. Most acute hospitals do not have avenues to care for these patients or others in the end of life stages. One method of providing care and comfort in an acute hospital setting for those who have chosen to discontinue treatment or whom aggressive treatment is no longer beneficial is the palliative care team. This team was developed to ensure that specialized services would be offered to the dying patient in the acute setting.
Subject: Palliative treatment (Usage)
Terminal care (Methods)
Authors: Adelstein, Willa
Burton, Suzanne
Pub Date: 06/01/1998
Publication: Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 1998 American Association of Neuroscience Nurses ISSN: 0888-0395
Issue: Date: June, 1998 Source Volume: v30 Source Issue: n3
Accession Number: 20986468
Full Text: Introduction

In medieval times, a hospice was a place where travelers and pilgrims could stop for rest, food, shelter or for help when they were tired, sick or dying. Many hospices were located throughout Europe and along the routes to the Holy Land. In the early 1800s, the Irish Sisters of Charity established the first hospices in Ireland and England. Cicely Saunders, a nurse who later became a physician opened St. Christopher's Hospice in 1967, beginning the worldwide hospice movement.[14] The first hospice program formed in the United States was at St. Lukes Hospital in 1974 in New York City. Many different forms of hospice care exist today but all provide services based on a holistic approach to life and death and involve patient, family and allied health care professionals working together.[15]

In 1959, Kubler-Ross presented a paper describing how dying patients suffered, even in the finest medical facilities.[13] Dying patients were frequently isolated from other patients, often heavily sedated and yet still in pain. They continued to have tests to monitor the course of their illness and treatment.

Somehow lost in all of this treatment was the human being with questions, needs, rights and pain. Her book, On Death and Dying, published in 1961, as well as subsequent publications,[14] gave the public a different view of the terminally ill patient. This book identified two important principles: dying patients should be able to choose how they spend the time they have left, and the remaining time should be as peaceful and comfortable as possible.[13]

There was a time in this country, some 50 or more years ago, when decisions related to health care and dying were made by the patient, family and physicians who shared their values and trust. Life and death were straightforward: before dialysis, defibrillators and ventilators, when your heart or breathing stopped you were dead. Death was an inevitable, but acceptable part of life.[8]

We are all aware of the technology that stops or delays death. Advanced life support, computer-driven ventilators, pacemakers and drugs to maintain blood pressure are used daily. We can keep a person who is brain dead "alive" on machines so a baby can be delivered, organs used or families given time to make life and death decisions.[3,6]

This article explores the concept of changing hospital environments to meet both the patient's and family's needs at the time of death, if the patient must die in the hospital. The concept originated from research done from the SUPPORT Study funded by the Robert Woods Johnson Foundation.

The Right to Die Issue

Today we have the opportunity to live longer, more productive lives, despite serious illness. However, for many patients this has resulted in prolonged dying and extreme financial expense. There is a strong feeling among Americans that they loose control over their lives when they become critically ill. In addition, dying is often prolonged and impersonal. This has led to formation of the right to die movement.

In 1975, the Quinlan[15] case posed an ethical and legal dilemma resulting from medical technology. Karen Ann Quinlan suffered a respiratory arrest that left her in a persistent vegetative state, unable to exist without artificial support. Arguing that their daughter would not have wanted to be kept alive in this condition with no hope of recovery, the family asked the court's permission to remove her from life support. Eventually this complex court case led to a decision that granted the family the right to remove life support. The Quinlan case helped define the social, ethical and legal controversies of the right to die issue.[4,9] Subsequently, the case of Nancy Cruzan, heard by the United States Supreme Court, further defined social policy on these issues.[11,12]

Cruzan and other similar cases reiterated that a competent patient, or an incompetent patient's surrogate, is ethically entitled to assess the burdens or benefits of any treatment based on the patient's wish and values and thereby accept or reject treatment. The specific issue in the Cruzan case was the withdrawal of nutrition and hydration.

In the United States, individuals have a constitutional right to request the withholding or withdrawal of medical treatment, especially at the end of life. A person's right to refuse treatment might still be valid when he or she becomes incompetent. All 50 states authorize the use of a written advanced health care directive to help decide for a person who is not able to speak for himself, but has recorded wishes in an appropriate legal document.[10] Many states have enacted laws providing for surrogate decision making; such laws allow a designated other to guide medical treatment for persons who are unable to make their own health care decisions. The decision maker has a duty to act according to the known wishes of the patient and, if those wishes are not known, the surrogate must act in the patient's best interest.

Care in the United States

In acute care hospitals it is becoming obvious that the care of dying patients represents a significant gap in delivery of appropriate care.[7] Designed to cure and discharge patients as quickly as possible, acute care hospitals are not suited to meet the physical and emotional needs of the dying.[5,12] Of the nearly 2.3 million people who die each year, many still die in hospitals. Many of these patients are unprepared for the health care decisions that they and their families are asked to make.

A study funded by the Robert Wood Johnson Foundation documented shortcomings in communication, frequency of aggressive treatment and the characteristics of hospital death in seriously ill adult patients.[1] The study was designed to understand prognosis and preferences for outcomes and risks of treatment (SUPPORT). This 28-million-dollar project studied 9000 patients in five hospitals, making it the largest study ever conducted on the care of dying.[1,2] The study was done in two phases. Phase I involved 4,301 patients and was designed to document shortcomings in the care of the dying. These shortcomings were grouped into three categories: communication, frequency of aggressive treatment and how patients die.

Half of the 31% of patients who did not wish to be resuscitated had a DNR order entered into their medical records, and only 47% of the physicians were aware of the preference.[1,4] Of patients who died, 46% had a DNR order written within 2 days of death, indicating to the researchers the patient had already received (in most cases) futile care. Unfortunately, 38% of these patients spent the last days of their lives in an intensive care unit (ICU) but were perceived not to have palliative care needs met. Of conscious patients who died in the hospital, 50% were reported to have moderate to severe pain at least half of the time.

Phase II looked at several objectives, including reducing futile treatments, lessening the patient's pain and discomfort and encouraging the patient to reject high technology efforts to sustain life. A nurse was trained to provide information and support to patients and families. In this phase, 2152 patients received usual care and 2652 patients were assigned to the special nurse, who was a liaison representing their needs to the physician.[4] Unfortunately, the phase II intervention failed to improve care or outcomes.[5] Researchers made several proposals:

* Continue to refine advanced directives and doctor-patient communication. Further study why physicians have difficulty attending to prognosis information and patient wishes.

* Work to better understand the culture of hospitals and other health care facilities to make them more user friendly and supportive of patient desires.

* Engage society and medicine in a dialogue on the meaning of the place of death in human life and medicine's proper stance toward death.

Changing Hospital Philosophy

Staff members at the University of Missouri Hospitals and Clinics in Columbia, Missouri, a 423-bed, Level I trauma center, using the SUPPORT studies' suggestions, decided to work to better understand the facility and make it more user friendly and supportive of patient's needs and wishes. A hospital administrator from the nursing department and a clinical nurse specialist presented hospital administration and medical staff members with a proposal to change the environment and policies in the hospital as they related to care of the dying patient. The chief of surgery became the medical liaison. The proposal called for a palliative care team that would provide direction for dying patients and their families who elected to receive only palliative care in the hospital. The philosophy of palliative care is based on the belief that all human beings have an inherent right to death with dignity and that death is a natural process. The palliative care team would provide patients and family with a different kind of care. The family would be given the opportunity to participate in the decision making process and be involved in the care. The goal was to insure that the dying process was as pain-free as possible and that the family was supported and counseled during this process.

Developing a Written Proposal

A palliative care team was to be developed as a consult service with no designated beds or charge. The intention was to avoid a "death ward" and provide a service to patients whether they were in an intensive care unit or on a general care floor. The proposal defined criteria to determine which patients could benefit from referral to hospice care or home care rather than staying in the hospital. The criteria included patients whose death was believed to be imminent or who chose palliative care. DNR orders had to be written for these patients and the disease determined to be terminal or uncontrollable. At the very least, agreement had to exist that efforts to prolong life would be unproductive, or clinical evidence indicated treatment was futile. The patient and family had to be informed of the clinical situation by a physician to facilitate understanding of these issues.

Organ donors were added to the program a year later. These were usually patients who had sustained severe brain injuries from trauma or massive cerebral hemorrhage. After the first brain death exam, families were informed of the prognosis and the palliative care team provided support and grief counseling for the donor family.

The proposal clearly outlined details of how to arrange for a palliative care consult and how the consulting individual would work with patient, family and physician as to how care would be provided during the patient's last days. Also outlined were environmental changes, such as moving the patient out of the ICU if possible. A semiprivate room may be converted to a private room, with a sofa bed placed in the room, and family provided a beeper. A palliative care sign was placed on the door.

The Palliative Care Team goals were:

1. Patients and family would gain greater control over the dying process.

2. Family participation in the last hours of the patient's life would increase.

3. The health care team's awareness of patient/family needs during the dying process would be enhanced, thus ensuring that care of the patient/family would be appropriate and to their choosing.

4. The institution and family would benefit from reduction in the cost associated with the patient care.

A unique feature of the palliative care plan was abbreviated physician order sheets directed toward emphasizing comfort. For example, vital signs were limited to temperature only, with the belief that fever may cause a patient to be uncomfortable and possibly require medication. Other options for the physician's orders included skin care and medication for pain, agitation or management of constipation and diarrhea. The remaining orders written for the patient would come from the family. Families were to be presented with an order sheet they would sign and coordinate or plan with the patient's participation, if able. Family/patient options on the order sheet included a' private room (if possible), sleeping sofa, volunteer hotline, family participation in care and patient's use of their own clothing.

Provision for religious, spiritual and cultural wishes was felt to be equal to or in some cases more important than medication. Therefore, the patients/families were asked to write orders for the staff to follow regarding their needs as related to the latter. Any other requests, within reason, were indicated on the sheet. This included: music therapy and having their own pets or one of the Pet Partner Program pets brought into their room.

Patients and families were given written brochures that clearly outlined team services, which included medical care, advanced practice nurses, social service consultation, spiritual counseling, psychological counseling, volunteer services and bereavement support. The criteria for family members were as follows:

* Agreeing to the provision of palliative care

* Wanting support and help in maintaining a natural comfortable environment

* Not wanting extraordinary life support measures.

The palliative care team also supported specific patient and family such as the right to:

* know the truth about their loved one's condition

* know the chance of recovery and options

* consent to or refuse treatment

* expert care to ease physical and emotional symptoms

* confidentiality, privacy and the respect for their personal values

* control the environment during the final days of the patient's life

* make ethical decisions during care

Staff training occurred one month before implementation by the consult team. Details on the teams purpose and goals, how to consult the team for services and approaching the patient and family were reviewed. Physicians received information on the new service from the medical director. In addition, physicians and nurses received one on one education as each patient was placed on palliative care.

Results

In the first two years, the team had 132 referrals. One hundred-ten of the patients received palliative care services. The patients/families who did not receive services either did not meet the criteria or chose not to withdraw support. The second year, two essential quality assurance (QA) activities were instituted. A form was filled out for all dying patients that gave the team a monthly report of how well dying patients' palliative care needs were being met. Physicians, nurses, social workers and other groups fed information related to concerns or problems with service to the team. Both the QA form and concerns from other disciplines were reviewed each month with all team members present. Action was then decided by the team and implemented as appropriate.

The benefits to patients and families have been obvious from comments by patients, as well as through written statements and comments recorded by the team from families and correspondence from family members. Family participation in care has increased, with the family feeling more in control of the process and the environment. Hospital personnel have become more aware of patient and family needs for bereavement support. This has resulted in less stress for the staff members who care for the dying patient.

The Palliative Care Team has altered the old "fear of dying" philosophy so prominent in most acute care hospitals. Our recommendations for other acute care providers who wish to do the same include four key elements:

1. Obtain administrative and medical staff support.

2. Develop a proposal including, but not limited to:

* Philosophy and goals of the program

* Program budget

* Budget

* Equipment

* Personnel

* Training

* Environmental changes

* Evaluation and QA methodology

3. Gather input on the proposal from multiple disciplines, including physicians, nurses, pharmacists, physical therapy, respiratory therapy occupational therapy, chaplains, social workers, radiology technicians, etc. Input is not only help but guarantees support when the program is implemented.

4. Hospital-wide education before implementation, and ongoing education for all staff. Hospital wide education by chairman of Palliative Care Team for adult staff members.

Case Study

Mr. E was a 40 year-old white male who was operated on in July of 1997 for a small bowel obstruction. In August of 1997, the patient underwent a reexploration for post operative small bowel obstruction. Multiple anastomosis were made at that time. It was felt that due to significant adhesions and acute inflammatory reaction there would be no more surgical intervention, and the abdomen was closed.

His past medical/surgical history revealed: status post splenectomy and exploratory laparotomy, colecystectomy, adjustment disorder with depressed mood, alcohol dependency, opiate and amphetamine abuse.

The patient was admitted to the general surgery service on August 28, 1997 with bacteremia and fungemia. On September 1997 at 7:00 am it was noted that the patient had an acute episode of left-sided hemiplegia. The neurosurgery service was consulted. Formal work up included an angiogram on September 19, 1997 which showed a cranial aneurysm of the right middle cerebral artery. In spite of aggressive medical management including amphotericin B, vancomycin and pressors the patient continued to deteriorate. The patient became septic and deteriorated neurologically with an increased right cerebral mass effect. On September 27, 1997 the patient was taken to surgery for right temporal craniotomy and evacuation of an intracerebral hemorrhage. The following day an ICP monitor was placed. The patient continued to decline in his neurological status and he was unable to be weaned off the ventilator. On October 1, 1997, late in the evening, the patient's intracranial pressure dramatically increased from 25 to 60 mm Hg. At that time it was felt that the patient had suffered another cerebral event and that cerebral herniation was most likely forthcoming. After consultation with the patient's family the neurosurgery service sent a palliative care consult to help the family make a decision as to how to proceed at this point in time. The palliative care team member met with the patient's family who included a wife and several children. Although the patient did not have a living will or an advance health care directive, the family had expressed their concerns that the patient had never wanted to be "a vegetable" and connected to a ventilator the rest of his life. They were in agreement that the patient should be designated DNR status and that no further therapies should be instituted. The family desired to call additional family members for further consultation. After being presented with the option of palliative care the family was in agreement that they wished to withdraw all support and be allowed to spend time with the patient in view of his numerous medical and neurological problems. The patient remained in the intensive care unit with the family at his bedside. He was placed on a t-piece and the ventilator was discontinued. The patient expired the following day at 10:30 am with family members at the bedside.

Summary

The Palliative Care Team looked at changing the hospital culture and being more user0 friendly as suggested by the SUPPORT Study. The future implications for the Palliative Care Team included:

* Continued studies of family/significant other satisfaction, financial impact for the hospital and changes in values and attitudes

* Develop a consultation service for other hospitals

Acknowledgements

Portions of this article were presented at the 9th International Conference on Cancer Nursing, August 1996 by Suzanne Burton in Brighton, England. The paper focused on the SUPPORT study and how a palliative care team could convert a hospital environment to meet the needs of the dying and the results a year after implementation.

References

[1.] Bedell SE, Pelle D, Maher PL, Cleary PD: Do-not-resuscitate orders for critically ill patients in the hospital. JAMA 1986; 256: 233-237.

[2.] Carlson R, Devich L, Frank R: Development of a comprehensive supportive care team for the hopelessly ill on a university hospital medical service. JAMA 1988; 259(3): 378-383.

[3.] Davidson KW, Hackla C, Caradine DR, McCord RS: Physician's attitudes on advance directives. JAMA 1989; 262:2415-2419.

[4.] Death with dignity - At home. The Washington Post, November 16, 1975:

[5.] Dying well in the hospital. JAMA 1995; 274:1634-1636.

[6.] Emanuel LL, Emanuel EJ: Decisions at the end of life: Guided by communities of patients. Hastings Cent Rep 1993; 23(5):6-14.

[7.] Ferrell BR, Rhiner M: High-tech comfort: Ethical issues in cancer pain management for the 1990s. J Ethics 1991; 2:108-112.

[8.] Gaylin W, Kass L, Pellegrino E, Siegler M: Doctors must not kill. JAMA 1988; 259:2139-2140.

[9.] Gillon R: Persistent vegetative state and withdrawal of nutrition and hydration. Ethics 1993; 19:67-68.

[10.] Glover J: Death and Saving Lives. Penguin Books, 1977.

[11.] Green M, Wikler D: Brain death and personal identity. Philos Public Affairs 1980; 9:105-133.

[12.] Hastings Center: Guidelines for the Termination of Treatment and Care of the Dying. The Hastings Center, 1988.

[13.] Kubler-Ross E: The care of the dying - Whose job is it? Psychosom Med 1970; 1:103-107.

[14.] Kubler-Ross E: The Dying Patient's Point of View. Russell Sage Foundation, 1970.

[15.] Lynn J, Childress J: Must patients always be given food and water? Hastings Center Rep 1983; 13:17-21.

Questions or comments about this article may be directed to: Willa Adelstein, BSN, MSN, 6300 W Route K, Columbia, Missouri 65203.

Suzanne Burton, MED, BNS, RN, is vice president, Sunrise Hospital and Medical Center, Sunrise Children's Hospital in Las Vegas, Nevada.

Copyright [C] American Association of Neuroscience Nurses 0047-2603/98/3002/00200$1.25
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