Providing Palliative Care for Incarcerated Patients
By Joseph Bick, M.D.*, Director, HIV Treatment Services, California Medical Facility, California Department of Corrections
During the past decade, this country has witnessed an increased emphasis on pain management and palliative care. Clinicians are being encouraged to more effectively alleviate pain in terminally ill patients, and there has been an intensified effort to encourage individuals to establish advance directives such as resuscitation status, living wills, and power of attorney. The routine assessment of pain has been advanced as the "fifth vital sign." These and other initiatives have raised awareness about end-of-life issues, and have contributed to an evolving standard of care for terminally ill patients.
Meanwhile, determinate sentencing, "three strikes" laws, and anti-drug initiatives have led to an overwhelming increase in the number of prisoners in this country. As of June 2002, 2.1 million people were incarcerated in this country's jails and prisons - the first time the U.S. prison and jail population exceeded two million.1 At the same time, the prison population is aging, with an increase in the proportion of inmates over 50 years old. Prisoners have a higher prevalence of HIV infection, hepatitis C infection, tobacco addiction, alcoholism, substance abuse, chronic lung diseases, and musculoskeletal disorders than similarly aged men and women who are not incarcerated.2 Many inmates received inadequate health care prior to incarceration, and therefore present with more sequelae and more advanced forms of their chronic illnesses.
In spite of this increase in the number of aging, chronically and terminally ill inmates, most people give little thought to how prisoners die. However, case law has established a constitutional duty under the 8th Amendment to provide care to the incarcerated that is not "indifferent to serious medical needs."3 Certainly, the alleviation of pain and suffering of the terminally ill falls under this requirement.
Recently, several groups have brought attention to palliative care in the correctional setting. Standards have been drafted to help guide those providing palliative and hospice care to prisoners.4,5,6 As of 2001, formal correctional end-of-life care programs were in place in 33 states and the Federal Bureau of Prisons, with more programs under development.4 The World Health Organization has published two booklets detailing pain and symptom management.7,8 What follows is based upon these publications (see related resources on page 5) and the author's experiences caring for terminally ill inmates.
Pain and Symptom Management
Terminally ill patients frequently experience pain and other unpleasant symptoms secondary to their underlying illness. Each patient should undergo a careful initial evaluation of his or her pain. A pain history should include pain location, severity, aggravating and alleviating factors, whether the pain is constant or intermittent, if the pain interferes with daily activities or sleep, and what treatments have and have not worked in the past.
Patients should undergo a careful initial physical exam, which should be repeated regularly during the course of the patient's illness. Radiographic studies can detect bone lesions that might be treated with palliative radiotherapy. In general, studies should be limited to those that are intended to lead to relief of pain or other unpleasant symptoms.
Anger, anxiety, and depression are common in those who are terminally ill. A careful psychological evaluation is therefore important when constructing a comprehensive treatment plan for the patient. The involvement of mental health professionals who are experienced with death and dying issues is invaluable.
Nociceptive and Neuropathic Pain
Pain can be classified as either nociceptive or neuropathic, and each type responds differently to treatment. Nociceptive pain occurs when nerve endings are stimulated, such as when a tumor expands in an organ, or metastasizes to bone. Neuropathic pain occurs when a nerve is injured or compressed, and can involve peripheral or central nerves.
Nociceptive pain is usually responsive to analgesics, whereas neuropathic pain may not be adequately relieved by analgesics alone. With neuropathic pain, additional benefit may be achieved with the use of tricyclic antidepressants or anticonvulsants. Amitriptyline or imipramine in starting doses of 25-50 mg orally each day can provide significant relief. Doses should be titrated as tolerated to 50-100 mg each day. These agents should be administered at bedtime as they can cause sedation, dry mouth, and postural hypotension. The anticonvulsants carbamazepine (Tegretol) and valproic acid (Depakene) can also be helpful in the treatment of neuropathic pain. Carbamazepine should be started at an initial dose of 100 mg twice daily and increased by 200 mg a day every few days as tolerated. Valproic acid is initially dosed at 500 mg at bedtime, and increased if necessary 200 mg every few days to a maximum dose of 1500 mg.
The World Health Organization emphasizes that analgesics should be given by mouth and on a fixed schedule. In situations where oral treatment is not feasible, rectal suppositories, transdermal patches, or subcutaneous injections can be used. (See Tables 1 and 2 for dosing schedules of common analgesics.)
Analgesics prescribed for severe pain in the setting of a terminal illness should be administered at fixed intervals to avoid cycles of poorly controlled pain and the associated anxiety and psychological distress of worrying about the next dose of medication. Analgesic doses should be increased as needed, with each subsequent dose administered before the prior dose has worn off. If the patient waits until the pain is significant before requesting an additional dose, consistent relief of pain will not be achieved. Long-acting analgesics should be used for the majority of a patient's daily dose, with additional rescue doses prescribed for "breakthrough" pain caused by activities such as movement or dressing changes. Typical rescue doses should be 50-100% of the dose that is being given every 4 four hours.
With regular use, tolerance to narcotic analgesics commonly develops. This physiologic process necessitates the use of higher narcotic doses to provide the same degree of relief. Patients develop a physical dependence and will experience withdrawal symptoms if narcotics are rapidly tapered or discontinued. This is not the same as addiction or psychological dependence, where patients demonstrate cravings for narcotics and a preoccupation with getting them.
Most pain can be relieved with appropriate doses of analgesics. When treating pain in terminally ill patients, the right dose is the dose that provides adequate pain relief. Depending on the patient, this could be 5 mg to 1000 mg of morphine (or its equivalent) every four hours. It may also be necessary to decrease the dosing interval of extended-release oral transdermal preparations.
Since most narcotics are metabolized by the liver, caution is necessary when treating patients with serious liver disease. Most narcotics are excreted by the kidneys, so individuals with renal failure can have metabolite accumulation. Dosing should be individualized based upon pain relief and side effects.
Mitigating Analgesic Side Effects
Common side effects of narcotic analgesics include constipation, nausea, and emesis. Drowsiness and confusion often occur when narcotic analgesics are first taken. With time, these side effects tend to diminish. Patients who continue to be sedated or confused may require a dose reduction.
Laxatives should be prescribed for all patients receiving narcotics before problems with constipation develop. The routine use of a stool softener like docusate 2-3 times a day is useful. The additional regular use of an oral agent that stimulates peristalsis (such as senna) is often sufficient to maintain regular bowel function. The dose of senna is 2 tablets every 6-12 hours. Patients will also occasionally require a stimulant laxative suppository or an enema to relieve more severe constipation.
Nausea and vomiting are common in patients being treated with narcotic analgesics. These symptoms can also be due to concomitant medications, constipation, renal failure, gastrointestinal disease, electrolyte abnormalities, and central nervous system disease. An effort should be made to determine the etiology of the patient's symptoms. Some useful medications for managing nausea and vomiting are listed in Table 3.
Challenges in Correctional Settings
Approximately 75% of prisoners have a history of drug and/or alcohol abuse.9 Given the opportunity, many prisoners continue to abuse drugs while incarcerated. Some prisoners who lack valid indications for narcotic analgesics amplify their symptoms in an attempt to obtain a prescription for these medications. Other patients who have a legitimate need for narcotics are victimized by inmates who coerce them to give up some or all of their medications. Correctional staff who witness these behaviors may actively discourage clinicians from prescribing these medications or create other roadblocks, and clinicians who have been deceived by prisoners may be less likely to believe their patients.
Directly observed therapy (DOT) can be used to limit the diversion of controlled substances. Except in the case of slow release preparations, consideration should be given to crushing narcotics and mixing them with water before administration.
It is useful to have a formulary that presents a broad range of options for the treating clinician. Long-acting patches and pills are very helpful for treating pain in terminally ill patients. Some patients will be troubled by side effects from one type of narcotic analgesic, but will do well on another. The more options available to the clinician, the more likely that the patient's pain and other symptoms will be adequately addressed.
A multidisciplinary pain management team is very useful. Team members can include the attending physician, mental health clinicians, nurses, pharmacists, neurologists, pain management specialists, and a chaplain. Utilizing the collective knowledge and experience of different disciplines increases the likelihood that the patient will receive the best possible individualized approach to his or her symptoms.
Palliative Care Settings
Some systems routinely transfer all inmates to community hospitals when they are nearing death. In many cases, however, the continuation of aggressive care is futile and leads to unnecessary pain and suffering. In an outside hospital, prisoners are more likely to be shackled because of security concerns. Family visitation may be more restricted in community facilities, which can result in the dying patient spending their last days or weeks isolated from family members and others close to them. For many terminally ill inmates who are not granted compassionate parole or release, allowing the patient to die in the correctional setting can be more compassionate than a hospital transfer.
Palliative and end-of-life care can be provided in a number of settings. Although it is not necessary to build a new unit to serve as a hospice, physical plant modifications may be required. If possible, do not house patients who have opted for palliative care together with those receiving aggressive curative measures. Clinicians often find it difficult to switch from a curative approach to a palliative model as they move from patient to patient. Patients who have elected comfort care often find it distressing to be housed with those who are being treated more aggressively, and may be troubled with doubt and regret about their decision.
Nothing will succeed in the correctional setting without the support and active participation of senior custody staff. Correctional administrators must believe that a program of palliative and end-of-life care can be securely provided, is fiscally prudent, and will not result in adverse media attention and/or litigation. Some correctional administrators are receptive to the idea of improving end-of-life care based upon their own personal experiences with illness and death. Unless legitimate security and fiscal issues are addressed, however, few will be willing to support this type of program.
End-of-life care programs may require additional staffing. On the other hand, the costs associated with housing terminally ill patients in acute care hospitals during their last weeks or months can be extraordinary. In many cases, the costs associated with a quality end-of-life care program can be offset by avoiding unnecessary community hospitalizations.
Hospice Admission Criteria
Not all health care providers are familiar with hospice and palliative care. Obtaining a truly informed consent to forego aggressive measures can be difficult within the correctional environment. Prior to hospice placement, patients should undergo a careful evaluation to ensure that they do in fact have a terminal illness likely to lead to death within the next six months. An effort should be made to ensure that all possible curative and or life extending measures have been considered and discussed with each patient. Patients should be educated about hospice and palliative care, and given an opportunity to visit the hospice unit. Assuming they choose to forego curative measures, only then should the patients be consented for transfer to the hospice unit.
Choosing hospice care is a decision to pursue comfort and palliation over aggressive life-prolonging interventions. Patients should be given the opportunity to decide whether they want to be resuscitated in the event that their heart stops or they can no longer breathe without the assistance of a ventilator. For most of those who elect hospice care, a do not resuscitate (DNR) status is appropriate. However, requiring a patient to choose DNR status in order to have access to hospice services runs counter to community practice and can be coercive.
Living wills, which provide guidelines for what a patient would like done if he or she can no longer make medical decisions, can be useful. Some patients prefer to designate a health care power of attorney. Discussions should be held with patients as early as possible to ensure that their preferences are respected.
Both community and inmate volunteers can play an important role in a correctional end-of-life program. Community volunteers can be recruited from local churches, mosques, synagogues, hospice organizations, and religious-based service organizations. Many inmates are enthusiastic about participation in a pastoral care services (PCS) program, and can improve terminally ill patients' quality of life. Some inmates choose to participate as a way to seek personal redemption. Others, facing the possibility of their own death in jail or prison, volunteer with the hope that their participation will decrease the likelihood that they will someday die alone.
All potential volunteers must be carefully screened prior to involvement in a correctional PCS program. Volunteers from the community should be interviewed to determine their motivation for involvement and whether they appear to be suitable candidates. If deemed appropriate, community volunteers must then undergo a custodial background check to ensure that they have no criminal issues that would preclude their involvement. Likewise, the PCS coordinator should carefully interview inmates seeking to become volunteers. Potential inmate volunteers should be carefully evaluated by correctional staff to determine if they have a history of preying on vulnerable individuals. Additional factors to consider include in-custody drug offenses and other recent rules violations.
An ongoing education program for caretakers of the terminally ill is essential. Clinicians must be able to manage pain, nausea, emesis, shortness of breath and other symptoms that occur in individuals with terminal illnesses. All staff and volunteers should receive comprehensive training before beginning work with terminally ill patients. Training should cover basic concepts of death and dying, palliative and hospice care, pain and symptom management, and the psychosocial aspects of grief and loss.
The orientation curriculum should be clear about what volunteers are allowed to do for patients. Volunteers should not perform duties normally attended to by medical staff. For example, volunteers should not medicate patients, bathe them, perform dressing changes, or obtain vital signs. Volunteers should not have access to medical records, nor should confidential details of patients' care be discussed with them. Inmates are a particularly vulnerable class, especially when they are ill and approaching death. The placement of other prisoners in a position where they could take advantage of dying inmates must be avoided. For similar reasons, neither staff nor volunteers should be permitted to either accept gifts from or be included in the wills of dying prisoners.
Routine visitation policies rarely suffice when it comes to terminally ill inmates. A system to facilitate visitation on short notice (at any time of the day or night) should be put into place. Additionally, rules pertaining to minors and those with criminal histories may need to be modified if dying prisoners are to have access to family members in their last days. The clinical condition of patients can deteriorate suddenly. Unless there is a close custody-medical interface, it is not likely that such liberalized visitation policies for the terminally ill will succeed. If a patient is close to death, he or she should be placed on a vigil status. During vigil, a PCS worker should be allowed to remain at the patient's bedside 24 hours a day, and family should have even greater access to visitation.
For those who have been incarcerated for many years, "family" may include other prisoners. If possible, an effort should be made to facilitate visits from inmates housed at the same facility if the patient considers them family or close friends.
For inmates who have lost contact with family but wish to communicate with them, a mechanism should be in place to attempt to locate these individuals. One option is to use an outside volunteer agency to help locate family. Not all family members are willing to reestablish contact with those who are incarcerated, or vice versa. In such cases, the desire to maintain privacy should be respected. Even when family members are willing to visit, there are frequently many unresolved issues of anger and guilt. Family members may have been victims of the dying patient, or the family member may have victimized the patient. Staff must anticipate and be prepared to mediate in these often-painful confrontations.
Working continuously with terminally ill patients can take an emotional toll on both staff and volunteers, so it is important to have an organized program to address their emotional needs. Memorial services - ideally open to both staff and inmates - should be held for those who have died.
The over two million individuals in this country's prisons and jails represent an aging population with multiple chronic medical problems. Many prisoners are destined to die while incarcerated. Correctional systems have a responsibility to attend to end of life issues, which include advance directives and management of pain and other symptoms of terminal conditions. Although many jails and prisons choose to transfer patients to community facilities for end of life care, patients can be cared for in the correctional setting in a secure, competent, compassionate manner. Close cooperation between custody and medical staff is necessary for the success of any correctional end of life care program. With the active participation of all those involved, terminally ill prisoners who will not be released can be provided a humane end of life experience within the correctional setting.
National Prison Hospice Association
The GRACE Project
Guiding Responsive Action for Corrections at End-of-Life
World Health Organization
American Academy of Hospice and Palliative Medicine
Centers to Improve Care of the Dying
National Hospice and Palliative Care Organization
Standards for Health Services in Prisons
Published by the National Commission on Correctional Health Care (NCCHC). Price: $59.95. Can be ordered online.
*DISCLOSURES: Nothing to disclose