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The Physician's Role: Palliative care

by Barbara Rubel MA, BCETS, CBS, CPBC

Bereavement Coordinator, Hospice

Abstract

This paper aims to address the relationship between suicide ideation in the terminally-ill, the rationale for physician assisted suicide (PAS), and how suffering influences the decision. The heart of the issue beats to questions that are unfolding with the findings released by the Oregon Health Division (OHD). I believe that we need to explore the variables that compel the terminally-ill to request physician-assisted suicide. The findings reported in the OHD describing the status of Oregon’s Death with Dignity Act suggest that some terminally ill Oregonians want to die by PAS because they fear suffering. If physicians assist their patients with adequate means in dealing with physical or emotional suffering, would the terminally ill request PAS?

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What choices do the terminally ill have as they face their greatest battle and why does it need to be a struggle in the first place? The battle comes when the needs of the terminally ill are not met. The terminally ill fight this battle when they are forced to deal with emotional or physical pain because of lack of social support. Harrold (1998) explains that  patients and their family are afraid that the terminally ill will become addicted to the pain medications due to side effects of medicines.  Most feel the pain medications should be given only when pain is so severe that it cannot be tolerated. The research clearly shows that as the terminally ill struggle with such issues, their physicians struggle with their own. Harrold (1998) writes that "many physicians express fear of legislative or regulatory action if they prescribe opiods in the dosages necessary to relieve pain " (p.38). Though the terminally ill fight the battle, and endure the suffering, there are no winners in this war. This paper reviews some current literature dealing with the physical and emotional suffering of those who are terminally ill and the ethical consideration of whether competent, terminally ill adults should be allowed to decide the time of their death.

THE ROLE OF PHYSICIAN AND HEALTH PROFESSIONALS

Shneidman (as cited in Lester & Leenaars, 1996) maintains that "physicians and other health professionals need the courage and wisdom to work on a person’s suffering at a phenomenological level and to explore such questions as ‘How do you hurt?’ and ‘How may I help you?’ They should then do whatever is necessary, using a wide variety of legitimate tactics . . . to reduce that person’s self-destructive impulses" (p. 181). Peace is found when the self-destructive impulses are managed appropriately. With this understanding, social workers, psychologists and skilled clinicians can work as a team to help the patient and family through the crisis. Palliative care needs to be discussed as the terminally ill fear suffering and dying in unremitting pain. Hendin (1998) explains that "we now know that giving analgesic medicine to patients at regular intervals rather than waiting for their pain to intensify provides better relief for chronic pain. Even our recent discovery that antidepressant medication can be effective in relieving otherwise intractable pain suggests the complexity of the perception of pain" (p.235).

Gilbar & Cohen (1995) report that Israeli oncologists, when treating cancer patients, must  share details of the patient's care  and assist them in voicing their concerns and opinions.  Though this study dealt only with Israeli oncologists, I believe that it pertains to physicians and patients in any country. Cancer patients need to articulate their wants and desires. What they need is an end to their physical and emotional suffering. The end can involve compassionate care rather than PAS and physicians must be reimbursed for providing that care. However, according to Harrold (1998) "inadequate reimbursement for care at the end of life is an acknowledged problem" (p.38).

One problem facing the terminally ill is their suicide ideation. It is the role of the physician and other health providers to intervene if their patients are suicidal. The intervention itself is to discuss all options. If the patient is defining those options as suicidal ones, then exploring why they are thinking about those options is appropriate. Alerting other trained professionals that their terminally ill patient is exhibiting suicide ideation is acceptable for physicians. Werth (1999) writes: "Turning to the ethics codes of the different national mental health organizations, there is a lack of agreement over the ethical obligations of members of the respective groups in situations involving potential harm to self. The American Psychiatric Association (1995) stated (section 4, number 8) that 'When . . . the risk of danger is deemed to be significant, the psychiatrist may reveal confidential information disclosed by the patient' (p. 6, emphasis added). Similarly, the APA (1992) indicated that 'Psychologists disclose confidential information without the consent of the individual only as mandated by law, or where permitted by law, such as . . . to protect the patient or client or others from harm' (p.1606, emphasis added). Thus, these two organizations allow breaking of confidentiality but do not ethically require it" (p.243).

Physicians and other health professionals are responsible for managing the self-destructive impulses of their patients. Physicians take an oath not to offer a lethal drug to their patient and to protect him or her from harm. The physician is trained to save lives. However, throughout their training, they are not provided with the tools to assess their patient’s values. Those values are significant and what helps to keep the patient alive when faced with suffering.

Gostin (1997) maintains the importance of  high quality end-of-life care with physical and mental pain management and the alleviation of depression.  It is vital that the physician listens openly to his suicidal patient and to help him or her sought out all the underlying issues, ranging from loss of dignity, spiritual needs, to fear of death. However, physicians sometimes create a safe emotional distance from their patient causing the terminally ill to fall deeper into depression, electing to end their life rather than be a burden on their family and physician.

As the terminally ill communicate their issues, the physician helps them cope by discussing options. Hendin, (1998) writes that physicians should "assure them that he or she will remain with them to the end and relieve their suffering" (p.242). The physician must reassure them that all the necessary measures will be taken as their condition worsens.

McCormick and Conley (as cited in Prawl, 1998) report that: Many physicians feel uncomfortable when no cure can be offered to a dying patient. These feelings of discomfort may lead physicians to act in ways designed to create a safe emotional distance from dying patients. The dying patient, upon noticing that her physician is distant or uncomfortable, feels depersonalized and inhibited in openly discussing her most important concerns. This is unfortunate because patients’ questions can be an opportunity to provide information that could reassure them about comfort measures that would be implemented as their condition worsens and how their dying could occur with appropriate support. (p.12)

As reported in the OHD, the Death with Dignity Act: The first year’s experience (1998) some terminally ill Oregonians request PAS because they fear both emotional and physical suffering. Autonomy becomes a critical issue, when patients believe that they will be unable to participate in activities, lose control of bodily functions, and become a burden to family, friends, and caregivers. PAS is not an autonomous act on the part of the terminally ill, as the patient relinquishes control to the physician and gives the physician the right to end his or her suffering on the physician’s terms. I believe that for the patient to be truly autonomous, the physician must give the patient every option and meets every need in providing quality end of life care. As the terminally ill struggle with end of life issues, he or she must endeavor to maintain a sense of self determination. However, patients must relinquish elements of that control to their care giver. Some terminally ill believe that they have the right to decide the manner in which they die. They do not want their family to be present as their bodies deteriorate. They do not want to experience the loss of body control. They do not want to go through the process of becoming a physical burden to their care givers. Nor do they want to experience the physical pain caused by their illness.

I strongly believe that if these patients received counseling and were assured their needs would be met, they would not chose PAS. How frightening it must be for the terminally ill to conclude that their care giver will not end their suffering in ways other than suicide. Brock et. al., 1992; Foley et al., 1995 (as cited in Ingham & Foley, 1998) studied 1,227 elderly deaths.  The caregivers reported  that 33% were in pain during the last 24 hours before their death. Justice occurs when physicians treat the terminally ill fairly and provide them with the necessary pain medications. What the terminally ill require is that physicians not neglect them as concerns and fears are communicated. The concerns can include pain and personal image, particularly as they grow weaker and notice dramatic physical changes in themselves, loss of bodily functions, unfinished business, the need to remain in control of their treatment decisions and having access to the truth.

Erasing much of a dying patient’s pain is medically possible. The black board that is their body, mind and spirit, should never be neglected. The neglect and the fear lead to depression. As complete sadness and overwhelming despair engulf the terminally ill, their thinking can become irrational. Though depression and fear can cloud the mind, Werth (1999) reports that "research has indicated that a significant minority, if not a majority of mental health professionals, do believe that people can make rational, reasonable decisions to die (Aulbach & Kalafat, 1997; Fenn & Ganzini, 1998; Ganzini, Fenn, Lee, Heintz, & Bloom 1996; Werth & Liddle, 1994); therefore, engaging in discussions about assisted death with clients could be an acceptable practice" (p.245). The acceptable practice of discussing PAS and following through with completion of the act became the legal option of terminally ill Oregon residents on October 27, 1997.

The OHD reports that the terminally ill Oregon residents can obtain a prescription from their physician for lethal medications as long as the patient is:

"An adult (18 years of age or older); A resident of Oregon; Capable (defined as able to make and communicate health care decisions; Diagnosed with a terminal illness that will lead to death within 6 months. Patients who meet these requirements are eligible to request a prescription for lethal medication from a licensed Oregon physician. To receive a prescription for lethal medication, the following steps must be fulfilled: The patient must make two verbal requests to their physician, separated by at least 15 days; the patient must provide a written request to their physician; the prescribing physician and a consulting physician must determine whether the patient is capable. If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, such as depression, the patient must be referred for counseling; the prescribing physician must inform the patient of feasible alternatives to assisted suicide including comfort care, hospice care, and pain control; the prescribing physician must request, but may not require, the patient to notify their next-of-kin of the prescription request".

As the terminally ill face critical issues, their physician guides them through the maze of treatment options. Benefits are provided to the patient respectfully and fairly, and together, a treatment plan is determined. It is the physician’s obligation not to harm the patient and this principle of nonmaleficience must remain intact, as the terminally ill struggle with their life options. Such struggles begin at the moment of learning their prognosis to the day of their death. Some terminally ill patients may undergo treatment and then request PAS. Others may request PAS upon learning of a prognosis of having less than six months to live and not opting for any life saving measures. My fear is that in years to come, the guidelines might change and those who do not have insurance coverage, who are less educated, mentally retarded, are minority, and have less income, might not be given any options. PAS would become an easy way to relieve society’s responsibility for providing effective end of life care. Physicians need to act upon the suicide ideation and provide help to the terminally ill and to their support system. They must preserve life and protect those who are vulnerable by improving their care.

RECOMMENDATIONS TO IMPROVE THE CARE OF THE TERMINALLY ILL

Adequate end-of life care must be assured for the 2.3 million Americans who die annually in the United States. Adequate care must include treating underlying depression along with pain management. Meier, Emmons, Wallenstein, Quill, Morrison, and Cassel (as cited in Emanuel, 1999) report that in "39 percent of cases, patients given PAS were depressed" (p.639).

The suffering of the terminally ill can be relieved by palliative care. In the very end of life, terminal sedation may be an option for those whose pain is unbearable. However, some physicians believe that they are helping a patient die when administering the morphine drip, instead of asserting that they are managing pain in the end of life. Thomas Preston, a cardiologist, writing an Op-Ed piece for the New York times (as cited in Zucker, 1995) writes, "It is given ostensibly to relieve pain, but over a period of time it can kill by depressing respiration . . . often the morphine drip is given with the real intention of killing the patient" (294). The doctrine of double effect, is that by the aggressive palliation, the pain is relieved but the death is hastened. I believe that the physician does not set out to intentionally murder his patient intentionally. The ethical distinction here is that the desired outcome is to stop the suffering in the very end of life, when there are no options left, and not to kill the patient, as Dr. Preston postulates.

The role of the family is an important consideration in end of life care. Cultural beliefs, customs and rituals, bring comfort to the entire family. Emotional, physical and spiritual needs of the dying are met as clergy and family play a critical role in the care. As the condition of the patient deteriorates, the entire family is affected. Physicians should provide families with options that offer information on various aspects of their loved one’s health care. Physicians need to respect the family’s beliefs, and in so doing, be mindful not to stereotype their patient in any way. Patients rely on family for guidance and the physician may have to work with a member of the family before any decision is made in regard to terminal care.

The physician must listen to both the terminally ill patient and his family as they communicate their needs. The physician must be willing to communicate all options. It is sometimes left to the family to elect certain procedures for their family member. Therefore, the physician must remain confident that through his communication, everyone’s needs are being met and everyone in the family understands what is being done and not done. The burden of care giving and financial responsibilities cannot be ignored. All issues need to be addressed as the family’s burden creates additional suffering for the terminally ill. As patients communicate their needs, they take control of their end of life care. It begins with devising a plan of action and having an advance directive. This will enable their wishes to be known when they are no longer capable of communicating those wishes. Dobihal and Stewart (as cited in Still, 1985) report that though the patient is dying, their voices should still be heard and their physician can allow them to have as much control  regarding their care, as possible.

Ley reports(as cited in Newell, 1997) "Effective communication not only greatly influences patient’s satisfaction with care and response to treatment but can also reduce their suffering because their personal needs, feelings, and expectations are addressed and legitimized" (p.371). Communicating one’s needs to family and physician includes discussing issues regarding dying at home or in the hospital, hospice, anticipatory grief, and the generalized fear of their own suffering. Suicide does not have to be an option as the physical and emotional suffering can also be eased by complementary therapies.

Options to ease suffering in the terminally ill include therapeutic touch, which helps the terminally ill by promoting relationships and pain reduction. Music therapy can also be utilized in end of life care. Curtis’ study of seventeen terminally ill patients reported (O’Callaghan, 1996) that the music was effective in reduction of pain, physical discomfort, relaxation and contentment scores. Other studies have found similar findings when the terminally ill listen to taped music. Lane (as cited in O’Callaghan, 1996) reported that listening to music can benefit patients while they are undergoing painful procedures. Physicians can incorporate massage therapy and the use of touch in their patient’s care along with any pain medication. Family members can be educated as to the importance of touch, as they may be hesitant to touch, afraid of causing additional pain to their dying loved one. Depending upon the response of the terminally ill, that touch may be exactly what is needed. Zuberbueler (1996) explains that   massage reduces pain and  slows the skin breakdown.  A blending of certain oils, and gentle massage is soothing and healing. According to Ellis, Hill & Campbell (1995) when the caregiver or family menber touches the patient there is continued dialogue and the family bond is strengthened during this difficult time.

Lichter (1991) found that "suffering is frequently caused by several psychological factors operating together, and the unraveling of this tangled skein may present real difficulties" (p. 139). With the concurrent use of pain medication, physicians can treat physical and emotional suffering with biofeedback, relaxation techniques, and transcutaneous electrical nerve stimulation (TENS). If relief cannot be obtained through pain medicine, treatments may include radiation therapy, nerve block and surgery. It is of major significance to find the means to control the pain and deal with any underlying issue, including depression, in order to limit suicide ideation. It is particularly important to inform the patient that pain can ultimately be controlled, as this information can significantly relieve the patient's anxiety.

This paper explored the relationship between suicide ideation in the terminally ill and physical and emotional suffering. A direct solution to the problem of suicide ideation in the terminally ill is educating physicians about more effective pain management. This education can include incorporating family therapy and cognitive-behavioral methods along with complementary therapies in end of life care. The review of the literature revealed that the terminally ill who die by PAS are suffering in what they believe to be a helpless and hopeless situation. The findings of the OHD has shown that autonomy and personal control are issues facing the terminally ill. Physicians must offer them hope that their pain will not be ignored, their stress and psychological concerns will be treated appropriately, and though they may loss control of bodily functions, they will be cared for in a dignified manner. Suicide does not have to be an option for the terminally ill when effective care is in place.

Chin, A.E., Hedberg, K., Higginson, G.K. & Fleming, D.W. (1999). Oregon’s death with dignity act: The first year’s experience. Department of Human Resources Oregon

Health Division Center for Disease Prevention and Epidemiology. Portland, Oregon. Retrieved March 20,1999 from the World Wide Web: http://www.ohd.hr.state.or.us/cdpe/chs/pas/ar-index.htm Health Division Center for Disease Prevention and Epidemiology. Portland, Oregon. Retrieved March 20,1999 from the World Wide Web: http://www.ohd.hr.state.or.us/cdpe/chs/pas/ar-index.htm

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