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THE SCHWARTZ CENTER ROUNDS |
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Correspondence: Richard T. Penson, M.R.C.P., M.D., Instructor in Medicine, Hematology-Oncology, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
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LEARNING OBJECTIVES
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Learning Objectives
Abstract
Presentation
Dialogue
Discussion
Conclusion
References
After completing this course,the reader will be able to:
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ABSTRACT |
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When a competent adult patient refuses lifesaving treatment for religious or personal reasons, caregivers have a legal obligation to respect this decision. A patient’s refusal of treatment adds particular challenges to the delivery of compassionate care. The case of a 50-year-old Jehovah’s Witness with acute myelocytic leukemia who declined blood product support is presented. Respecting her religious beliefs during chemotherapy required balancing risk and benefit, watching her suffer while unable to intervene with what the staff saw as simple treatment, and eventually undertaking a complicated grief process. Jehovah’s Witness beliefs regarding blood products are reviewed. Caregiver roles and responsibilities are discussed in the context of psychosocial, legal, familial, and ethical issues.
Key Words. Jehovah’s Witness • Autonomy • Beliefs • Responsibilites
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PRESENTATION |
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| She wanted everything done, but she wouldn’t take the one essential thing that would save her life.
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Treatment was initiated, using erythropoietin and G-CSF to increase her blood counts, and aminocaproic acid to help prevent bleeding. Ms. LF began induction treatment 2 months later. A bone marrow biopsy after 1 month of induction chemotherapy demonstrated that she was in complete remission. During the next 4 months, she received four cycles of post-remission chemotherapy with an attenuated dose of cytosine arabinoside (Ara-C). With a hematocrit of approximately 20%, she experienced extremely symptomatic anemia. Two months after finishing post-remission therapy, a bone marrow biopsy showed no evidence of AML. Her hematocrit slowly returned to normal with a peak value at this time of 35.9% while receiving erythropoietin. Fourteen months later blasts were again found in her peripheral blood.
The risks and benefits of continuing therapy were discussed with Ms. LF. She remained adamant in her refusal of blood products and repeated that she wanted to continue treatment and to "die fighting" her disease. After deciding to go forward with treatment, she received an attenuated schedule of Ara-C (3 days) with a poor response. Ms. LF was managed as an outpatient for several months but was eventually readmitted for treatment of relapsed AML complicated by fever. She again began chemotherapy. When her hematocrit dropped below 10%, she was treated with bovine hemoglobin. Initially, Ms. LF was reluctant to accept the bovine-derived product, but she eventually agreed to accept it after the elders from her congregation approved its use in her care. During reinduction chemotherapy, the lowest level that Ms. LF’s hematocrit reached was 7.1%, partly contributed by free bovine hemoglobin.
After 2 weeks of hospitalization, she began a precipitous decline with severe anemia, renal failure, and pulmonary infiltrates of unknown etiology. Ms. LF continued to state that she wanted to "fight" her disease. She was moved to the medical intensive care unit (MICU) for dialysis and later intubated for respiratory distress. A final bone marrow biopsy confirmed persistent blasts. She died 3 days later.
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DIALOGUE |
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Nurse:
I met this patient when she was first diagnosed and admitted. She was a wonderful person. She had a very strong faith, but she was quiet about it. She really was firm in her decision. Her resolve was all the stronger because she was a nurse and understood the ramifications of her decision. It was easy taking care of her because for the first year and a half she basically flew through her treatments with minimal side effects. The low blood counts were not a major issue. She would always somehow pull through each one. I think the nursing staff was still hopeful during her last admission that she would pull through this, but she didn’t. When she made the decision to accept the bovine product, we started to question her choices, asking, "What does this really mean? Why is she doing this? Why doesn’t she just take blood?" There was a conflict there because she was also telling us that she still wanted everything done. She wanted everything done, but she wouldn’t take the one essential thing that would save her life.
As she deteriorated, the staff became discouraged. There was also anger because as a staff we hang blood all day long. It’s a task that we do routinely. To us, this is such a simple, routine thing, but we aren’t Jehovah’s Witnesses. So, we had to come to an understanding of her beliefs. The chaplain helped us with that. Understanding why she made her decisions and what they really meant helped us. It was still very difficult because we did not agree with what she had decided. We all felt badly that she ended up in the MICU. She even had a cardiac arrest there. It was not something that I wished for her. We thought that it would have been preferable for her to go home with hospice and die peacefully at home, but this is what she chose.
Oncologist:
I think this case has a lot of interesting facets. She was a very vivacious, lively, wonderful woman. We wanted to treat her. She had the t(8;21) with a good chance of cure with conventional therapy. However, we were stuck with the problem that we couldn’t support her properly through the treatment or give her full doses. In this predicament we improvised. I think we did the best we could. She achieved a remission that lasted more than a year, and she remained the same person towards the end. I think the anemia was the primary cause of her renal failure. She was running a hematocrit of 7% or 8%, and I think the kidneys underwent necrosis. At that point, it was hopeless.
Fellow:
She stated several times that she wanted to "die fighting" the disease, and I think there was something about her demeanor that was particularly striking. It really touched the staff everywhere that she went in the hospital from the clinics to the inpatient floor to the intensive care unit.
| It’s hard because of our overlay of what we would want for someone versus what they want for themselves.
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Oncologist:
I think we communicated risks to the patient quite graphically and clearly, and she knew exactly at each point what to expect and what the issues were. She very freely chose this route.
Faith, Identity, and Autonomy
Chaplain:
The Jehovah’s Witness belief about the non-eating of blood or the transfusion of blood comes down to three particular Bible passages, and for them it is one of their strongest convictions. If this is violated, it compromises their relationship with God. It causes their eternal life to be put into jeopardy, and it separates them from their church and often from their family as well. So, that was what she was facing and why she wanted to do everything she could except violate this fundamental belief.
Palliative Care Physician:
There seems to be a further dimension here. Some of the Jehovah’s Witness members I have known over the years have had a very real sense of a Devil, a Devil acting in life, a Devil being the tempter. The irony is that if offering a helpful modality of care violates the religious tenet, the caregiver might be seen to be in league with the Devil. It can be the most horrible catch-22. The thought of this woman suffering in her last hospitalization is very real. However, the thought of her caving in to the tempter would be a far greater suffering.
Oncologist:
Just because she couldn’t have blood transfusions doesn’t mean that she wanted a less than aggressive approach. She wanted a very aggressive approach. She wanted to live. She had three children. She had a lot to live for. She wanted everything done, but she couldn’t take blood.
MICU Nurse:
From everything that you’re saying, you honored the patient’s wishes, and you included her every inch of the way. It’s hard because of our overlay of what we would want for someone versus what they want for themselves.
Chaplain:
Yes, in fact, in the mind of the Jehovah’s Witness, when she died because of her belief, she died a martyr’s death. She died for her faith, and so that would be the greatest honor she could give to her Creator.
Family Friction
Oncologist:
There was an interesting dynamic between her three adult children, which I never really saw in the hospital but which was very poignant after her death. She had two sons and a daughter. The daughter was not a Jehovah’s Witness, and the two sons were. After the funeral, people were supposed to gather together, but it never happened. Her daughter was quite upset over what had happened. After Ms. LF died, her daughter was outside crying and refused to be consoled by anyone. In the end, nobody gathered together at anybody’s house because of that.
Pediatric Nurse:
This is often tougher and more complicated in pediatrics where parents are making such decisions on behalf of a child. In this case, the person making the decision was the person who was going to live her life and die her death, and when it’s parents of a child, it really stirs the staff up. Usually, we end up having to talk with the legal team and to figure out where the boundaries are.
Caregiver Conflicts
Fellow:
When she was actually on the floor and getting treated, she would have different house staff. I remember going into her room and she would say, "Will you tell the intern to stop telling me that I could die if I don’t get blood products? I know that." I probably would have felt the same way that the interns were feeling if I had been involved in a similar case when I was an intern. I think the fact that so many people spoke with her about the consequences of her decision reflects an anxiety on the part of the house staff. You want to do something to help, and you think that you can see so much more clearly. I think I probably would have felt similarly 4 or 5 years ago without the benefit of having a longer relationship with her. Without that benefit, I think it’s very difficult.
Nurse:
Another important aspect of this case had to do with the congregation and the elders. They would come in, especially during her last admission, to visit her. We felt like they were checking up on her. They would come in to watch and to ask questions and to see what we were doing and to see what we were hanging. If we went in and hung the bovine hemoglobin while they were there, she would say to them, "This isn’t blood." She would have to clarify what was being hung. We felt like we were being watched to make sure that we were doing the right thing according to their beliefs. When she went to the MICU, there was always someone there, watching to make sure that no one would hang blood. There was a lack of trust.
| The irony is that if offering a helpful modality of care violates the religious tenet, the caregiver might be seen to be in league with the Devil.
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MICU Nurse:
We care for Jehovah’s Witnesses periodically, and one thing we do a lot of in the MICU is talk with the people. We really talk with the patients about what kind of intervention they want, not just from us but from the people from the church. It’s very common that folks come in and take the role of supporters but also of eyewitnesses to what sort of treatment the patient is getting. I think that this practice is probably common because we’re an unusual hospital. We are very likely to respect what the patient’s wishes are in this regard, but a lot of hospitals really don’t. So, this is a very standard practice for them.
Oncologist:
For me, the most tumult occurred when we first met her and we were trying to decide what to do. With a t(8:21), Ms. LF had better than a 50% chance of being cured with chemotherapy alone, but we couldn’t deliver the full therapy to her. I questioned whether we should even start treatment and whether we could offer some innovative approach. I did a lot of thinking at that point, and we talked with her about it. I felt the decisions weren’t so difficult for me after we got started.
Pediatric Nurse:
When you talk about the decision of whether or not to embark on treatment, there is also the potential to say, "If we embark on this treatment, I’m not going to make this intervention without these particular options. I can’t do it, and let’s find somebody who can."
Oncologist:
Actually, I do not feel that way. I’ve become known among the Jehovah’s Witnesses as a doctor who will take on such patients. It is true that there are a lot of doctors who will not take them on because they feel it’s not within the standard of care and don’t want any part of it.
Facilitator:
How often did you revisit the issue of blood transfusions? I don’t mean in a tempting way but in a helpful way.
Oncologist:
I did bring it up on a number of occasions, especially when she came to the clinic. I just wanted to see if her mind had changed over the span of time, and it never did. She was unwavering in her belief, and I respected her for that.
Nurse:
From the nursing point of view, we didn’t ask her if she wanted blood. We worked on making sure that she understood what would happen to her without blood. She understood all of it, and she was petrified. She was very scared. She’d say to us, "Please help me. Please pray for me." It was very difficult for us to watch as she declined.
Facilitator:
But how was that different than all of our patients when that happens to them?
Nurse:
Because I knew what she needed, and we couldn’t give it to her. She needed blood, but she didn’t want it. I respected her decision, but she wouldn’t take something so simple, something that we do everyday.
Oncologist:
I think this was a bigger issue for the nurses than the doctor. The nurses are more hands on and closer to the suffering. They’ve dedicated their lives to helping people, and they’re withholding the one thing that would solve the problem.
Roles and Responsibilities
Fellow:
I was never conflicted about what we were doing, especially given the fact that she was a nurse. I felt that she really understood the implications of her decision. Even after she received her first cycles of chemotherapy, she decided that she wanted to go on, knowing how bad things could get on chemotherapy. She still made the decision to forge ahead, even knowing that the odds of survival were slim.
| Consistently, courts have upheld the rights of competent adults to refuse lifesaving treatment.
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Facilitator:
Did you feel any blame, since you were the one who gave her the chemotherapy?
Fellow:
Yeah, sure. It weighs on your mind. I thought about it a lot. I think that the only thing that you can do is try to present things as realistically as possible and hope that they understand. If she wasn’t a nurse, I think that it may have been a little more difficult for her to actually envision what truly may happen to her, what anemia, severe anemia, truly means and how she might suffer with that.
Oncologist:
Guilt is an interesting response. I felt that she understood, and so I didn’t really feel a lot of guilt or blame. I felt that she and the rest of the people in the church didn’t view death as the worst thing or as something to avoid but instead saw death as a part of life. They had chosen their ground rules, and we stuck within their ground rules. If death was the outcome, I don’t feel that they worried that much about it. So, I was willing to abide by their rules, and I didn’t feel that guilty about what we were doing. I think, under those circumstances, we were giving her our best effort.
Fellow:
She had asked me, "Do you feel uncomfortable with my decision?" I told her that I didn’t feel uncomfortable and that there would only be one point when I might. That point came during her last admission when things became critical and I knew that hanging blood could potentially save her life. Then, I did feel very conflicted in my role. As a physician, I wanted to help her, and I wanted to do everything that I possibly could to help her. As a person, as her friend, I completely respected what she wanted to do. It was never really an issue for me until the end when I felt that she was suffering from the anemia. That was hard for me to watch.
Palliative Care Physician:
Another aspect is that the treatment we provide isn’t unambiguously good. Even with full therapy, it wasn’t very clear that this patient was going to be cured despite the best that we had to offer, but there was an opportunity for us to focus our frustration on an external factor. I think the other part of this that strikes me is the ambivalence in the patient. Here was somebody who really wanted everything, and there seems to be a contrast. There’s a feeling that the patient was completely settled, but she was also asking for help and accepting bovine hemoglobin, which seems to be slicing and dicing the rules a little bit. There’s a feeling that we can blame the church. I think there’s a dynamic going on that has to do with our own frustration at not being able to help and our willingness to say that we really could have saved her if we could have just gotten the church out of her life. Maybe we were projecting something that she didn’t share.
Fellow:
I think that your point touches on the issue of informed consent. Do people ever really know what they’re getting into? If you sit there and discuss with someone from today until next week about a future bone marrow transplant, does the person truly know what that transplant is going to entail? You can tell the patient all of the statistics and risks, but I don’t think the person can truly know what it’s going to be like. After seeing a number of bone marrow transplants, I would think a lot more carefully about undergoing one myself than I would have 8 years ago. I think in the end she was confronted with severe discomfort that she never could have imagined, but she was still very clear. Even at that point, even though her hematocrit was low and she had limited oxygen carrying capacity, Ms. LF was still working within her general framework. She was just three standard deviations away from what she ever thought she’d experience.
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DISCUSSION |
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| When parents are making decisions about their children’s health care, there are more restrictions on their autonomy.
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As medical treatments have grown more complicated, so has the WBTS’s regulation of blood products. The WBTS specifically prohibits whole blood, red blood cells, white blood cells, plasma, and platelets in addition to preoperative banking of one’s own blood. Other components such as albumin, fibrin, bone marrow, stem cells, dextrans, and oxygen carrying blood substitutes are more acceptable. The WBTS leaves decisions about accepting these components to the discretion of individual conscience [1,5,6]. There has also been some debate within the Jehovah’s Witness community about the WBTS’s blood policy [5]. While one Jehovah’s Witness may accept all blood products except for whole blood, another may refuse all blood products, transfusion techniques, and agents to increase blood counts. Because of such complexities and variations, caregivers need to discuss these issues with each Jehovah’s Witness patient in order to understand which blood products, if any, the patient feels are acceptable [2].
Treatment of Jehovah’s Witness Patients
Several new procedures have emerged to address the medical needs of Jehovah’s Witnesses. Some hospitals have initiated "bloodless surgery" programs, which rely on several techniques to reduce blood loss during surgery [2]. One technique, cell-saver autotransfusion, involves salvaging lost blood from the surgical field, cleaning it, and returning it to the patient. During the procedure, the blood remains in a constant circuit with the body, so many Jehovah’s Witnesses accept this technique [2, 5]. Other techniques to address blood loss include hormonal suppression of menstrual cycles, limited phlebotomy, and stimulation of blood component production by agents such as erythropoietin [7].
While treating any patient with leukemia involves a balance between treating the disease and avoiding treatment toxicity, this balance becomes much more tenuous for patients with leukemia who refuse blood products. Recent case studies report success in treating Jehovah’s Witness patients with leukemia [8–10]. All-trans retinoic acid combined with arsenic trioxide has been used with minimal hematological toxicity for patients with acute promyelocytic leukemia [9]. Remission has been achieved in Jehovah’s Witnesses by using attenuated-dose chemotherapy along with agents such as erythropoietin and G-CSF to address bone marrow suppression, but durable relapse-free remission is rare [10]. Some have advocated using larger initial doses [10].
Ethical Consensus
Autonomy
Consistently, courts have upheld the rights of competent adults to refuse lifesaving treatment [11–13]. This right also extends to include incompetent adults when advanced directives or other convincing evidence have made the patient’s wishes clear [14, 15]. The 1976 case of Karen Quinlan was pivotal in addressing the issue of care refusal. At the time of the case, Quinlan had been in a vegetative state since 1975, and her father wished to withdraw artificial ventilation. Convinced by the evidence presented that Quinlan herself would have chosen to discontinue treatment, the U.S. Supreme Court ruled in favor of withdrawing ventilatory support [14]. The 1990 case of Nancy Cruzan further addressed the issue of surrogate care refusal on behalf of an incompetent adult. As a result of severe head injuries following a car accident, Cruzan had entered a persistent vegetative state with no signs of significant cognitive function. Cruzan’s parents petitioned the court to discontinue the artificial nutrition and hydration that were keeping Cruzan alive because they felt that she would not have wanted to live under such circumstances. Cruzan’s case differed from Quinlan’s because the evidence regarding Cruzan’s wishes was less convincing. Here, the Supreme Court ruled that a state is not required to enforce a surrogate decision-maker’s refusal of treatment on behalf of an incompetent adult unless there is "clear and convincing evidence" of the patient’s wishes [15].
| While patients’ reasons for refusing treatment may be religious, they may also be personal or cultural.
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Courts have also specifically upheld the rights of adult Jehovah’s Witnesses to refuse lifesaving blood transfusions [16]. However, a patient’s right to refuse lifesaving treatment has been legally challenged when the person refusing blood is pregnant or will be abandoning his or her children by dying [1, 16]. The latter of these exceptions only applies if no one within the person’s family or community is willing and able to take guardianship of the person’s children [16]. The case of Norwood Hospital v. Munoz addressed this exception. Yolanda Munoz was a Jehovah’s Witness who was admitted to a hospital after her gastric ulcer began to hemorrhage. The hospital staff was able to stop her bleeding but felt that she would probably die without a blood transfusion if she began to bleed again. One of the deciding factors for the court was its obligation to protect the interests of third parties, in this case of Munoz’s minor son. The court decided that because Munoz’s husband could care for the couple’s son, the son would not be abandoned and the court’s interest in protecting his well-being did not outweigh Munoz’s right to refuse the transfusion. In the end, Munoz’s ulcer did not hemorrhage, and she did not require a transfusion. Despite the issue being moot in her case, the court ruled that she had been legally justified in refusing blood transfusions but that she would not have been justified if her death would have led to the abandonment of her son [16].
Since Jehovah’s Witnesses refuse blood transfusions but then require alternate therapies that are often risky and expensive, questions about resource allocation and justice become significant [7, 17]. However, the argument that Jehovah’s Witnesses should be responsible for the additional health care costs incurred because of their religious decisions parallels other situations where patients increase their risk of harm through personal choices and actions. Smokers, for example, are not held accountable for health care costs related to their smoking. For this reason, there is now consensus that Jehovah’s Witnesses should not be held accountable when they require expensive, alternate treatment [17].
Ethical Controversies
Bovine Hemoglobin
Bovine hemoglobin transfusions were first attempted in the 1940s but with little success. Patients developed anaphylactic shock, renal toxicity, and hypertension [18]. Bovine hemoglobin has also been shown to have both vasoconstrictive and immunosuppressive effects in animal models [18]. Recently, ultrafiltration and purification techniques have significantly decreased such side effects, making hemoglobin transfusion possible. Like human hemoglobin, bovine hemoglobin contains two alpha and two beta subunits, each of which has the capacity to carry one oxygen molecule. When outside of erythrocytes, hemoglobin disassociates into 16 Kd monomers and 32 Kd dimers, which are filtered by the kidney and result in renal toxicity [18]. Manufacturers have addressed this toxicity through polymerization and cross-linkage of the subunits, creating products such as Hemopure® [18, 19]. While bovine hemoglobin and human hemoglobin have similar molecular structures, bovine hemoglobin’s affinity for oxygen is not affected by 2,3-diphosphoglycerate and is instead regulated by chloride [18, 19]. Hemopure® has been found to have an increased capacity for both oxygen uptake in the lungs and oxygen delivery in the tissues [18, 19]. While the administration of bovine hemoglobin has been shown to increase the concentration of methemoglobin, hemoglobin’s inactive form, in peripheral blood, it does not appear to significantly alter hematocrit levels or platelet counts [19].
For Jehovah’s Witnesses, free bovine hemoglobin currently falls within a different category than the absolutely forbidden blood products, and the decision of whether or not to accept bovine hemoglobin is left to the conscience of individual Jehovah’s Witnesses [1]. While both the Genesis and Leviticus passages specifically forbid the ingestion of animal blood, bovine hemoglobin products such as Hemopure® are considered minor blood fractions because they are molecular and noncellular [19]. This distinction makes them a matter of conscience [3, 6]. Many questions remain as to how far a person’s individual rights should extend when that person’s decisions could potentially affect the health of others, such as when parents refuse to immunize their children [20, 21]. While the death of a Jehovah’s Witness who refuses blood will obviously affect his or her family, friends, and caregivers, the patient’s decision generally does not have direct consequences on the physical health of others [21]. However, there is some question as to whether or not animal-derived products like free bovine hemoglobin are safe from a public heath standpoint [22]. Concerns have been raised about whether animal-derived blood products could potentially lead to human infection by prions. While there have been no firm reports of this type of contamination, more research is needed to determine the potential risk of such transmission [22].
| Caregivers feel guilt and frustration when following a patient’s wishes leads to that patient’s suffering and death, and they question their own decisios and actions.
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Children and Adolescents
When parents are making decisions about their children’s health care, there are more restrictions on their autonomy. Consistently, courts have ruled that the government may impinge upon a parent’s religious freedoms when the parent’s decisions are endangering the welfare and health of their children. The Supreme Court addressed this issue in Prince v. Massachusetts. In its 1944 decision, the court upheld the conviction of a Jehovah’s Witness who had allowed her daughter to sell Jehovah’s Witness publications on the street, which violated Massachusetts’ child labor laws [20]. Arguing in its affirmation that a person’s right to religious freedom "does not include liberty to expose the community or the child to communicable disease or the latter to ill health or death," the court ruled, "Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves" [20]. Several courts have given hospital staff the authority, through court orders, to give children lifesaving blood transfusions even when the children’s parents refuse this treatment [1, 23]. More recent cases have involved adolescent Jehovah’s Witnesses who, in accordance with their parents, refuse lifesaving blood transfusions. Rulings in these cases have addressed the need for courts to assess the minor’s maturity and understanding of the consequences of refusing blood before automatically deciding that the transfusion is in the minor’s best interest [24]. There has also been a call within the medical community to give adolescent patients more control over their care in situations where treatment is potentially lifesaving but also prolonged and risky [25].
Conflicts
Family
Even in situations when a seriously ill patient does not refuse treatment, that patient’s illness has a large impact on his or her family [26, 27]. Many additional challenges and questions arise in dealing with the families of patients who refuse potentially lifesaving treatment. Legally, a competent adult patient has full authority to refuse treatment, independent of what his or her family may believe or want. Still, regardless of whether or not family members agree, the patient’s decisions greatly affect his or her family. In her 1997 ethnography, The Spirit Catches You and You Fall Down, Anne Fadiman demonstrated how family involvement becomes even more significant when parents are refusing medical care on behalf of their child [28]. Fadiman described a series of conflicts between the parents of Lia, a young Hmong girl diagnosed with a seizure disorder, and caregivers at the county hospital in California where Lia was often admitted to the emergency room. Lia’s parents, who were Hmong refugees, saw some of the treatment that American caregivers wished to provide as being harmful to their daughter and did not trust the opinions of caregivers. They began giving Lia less than the prescribed doses of her antiepileptic medications [28].
During the course of her illness, hospital staff used court orders to remove Lia from her parents’ home twice [28]. She returned to her parents’ custody after having a series of overnight visits with them, followed by blood tests confirming that Lia’s parents were giving her adequate doses of her medication. These removals led Lia’s parents to further distrust health care providers. They eventually did give Lia the prescribed doses of her medication but only after a social worker gained their trust. Lia’s caregivers often expressed frustration and anger about the parents’ actions and about the misunderstandings that occurred [28]. When refusal of care involves a minor, treatment decisions become even more charged for patients, families, and caregivers. Family members experience a strong and complex range of emotions—from fear to guilt to anger to grief to hope—during the course of the patient’s illness, and their feelings need to be acknowledged and addressed.
Caregivers
In addition to the emotions associated with losing any patient, situations in which patients refuse lifesaving treatments involve an undercurrent of issues—a disordering of caregiver roles and a clash of belief systems. Refusals of potentially lifesaving blood transfusions by Jehovah’s Witnesses evoke strong emotions among the staff [29, 30]. One mother of five children died from an internal hemorrhage that followed a Cesarean section. Both the patient and her husband refused the use of blood products in her care, and at one point her husband and brother-in-law physically prevented the attending obstetrician from giving her a blood transfusion. The fellow involved with the case struggled over complying with the patient’s refusal, which "flew in the face of everything she had trained for, everything she believed in, everything she cared about, everything she had sworn an oath to do" [29].
| This agreement, once made, requires abiding by a patient’s decisions even when they conflict with our own understandings and routines.
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While patients’ reasons for refusing treatment may be religious, they may also be personal or cultural [21, 28, 30, 31]. One case was reported in which a woman made a personal decision to completely refuse conventional therapy for her breast cancer. Her decision frustrated and confused her physician, though he reflected that "it must be acceptable in a free society for competent adults with curable cancers to die because they choose to refuse treatment" [31]. In addition to addressing family involvement, Fadiman’s book also explored culturally based care refusal. The ways that Lia’s parents questioned her treatment reflected fundamental differences between their cultural understandings and those of Lia’s caregivers. For example, many Hmong believe that people’s souls are at large when they are unconscious, making anesthesia a risky procedure from their perspective [28]. Hmong also often distrust treatments that have negative side effects, and this explains why Lia’s parents felt that her antiepileptic medications, which caused hyperactivity, were harmful [28]. As Fadiman described the miscommunications or "collisions" that occurred between Lia’s parents and the medical staff, she reflected, "As it turned out, the encounters were messy but rarely frontal. Both sides were wounded, but neither side seemed to know what had hit it or how to avoid another crash" [28]. While neither Lia’s parents nor her caregivers were attempting to be coercive or harmful, both sides suffered when they came into contact with each other.
Self Examination and Compassionate Care
Conflicts emerge when patients refuse lifesaving treatment. If a patient’s belief system fundamentally clashes with those of caregivers, it challenges the boundaries of what is ethical, compassionate, and acceptable. While balancing beneficence and nonmaleficence, the most good for the least harm, caregivers must also respect autonomy and justice. A patient’s refusal of care alters routine understandings of beneficence and nonmaleficence and complicates caregiver roles. Suddenly, giving a blood transfusion, a routine act of beneficence, has become an act of maleficence for the patient in question. Caregivers feel guilt and frustration when following a patient’s wishes leads to that patient’s suffering and death, and they question their own decisions and actions [29]. A patient’s refusal of lifesaving treatment leaves caregivers in a complicated dilemma over what their roles and responsibilities should be. It forces them to question whether respecting a patient’s faith, identity, and wishes can justify doing harm to that person’s body and to explore how upholding autonomy conforms with their conceptions of compassionate care.
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CONCLUSION |
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—Plato [32]
Were Ms. LF’s caregivers harming her by respecting her wishes? If one considers only her physical body, the answer is yes. However, if one considers the person that Ms. LF saw and understood herself to be, the answer is no. Ms. LF knew that her physical body would deteriorate and that she would likely suffer. Yet she chose to go forward with chemotherapy in the absence of blood product support. To her, quality of life meant maintaining her personal integrity as a Jehovah’s Witness and doing everything that she could within the context of her faith to combat her AML. How she lived was more important than whether she lived.
Cases like that of Ms. LF may seem to fundamentally conflict with caregiver roles and responsibilities. However, though they complicate care, they also prompt caregivers to expand their compassion for patients. It is a lot to ask that caregivers treat a patient even when they disagree with the person’s decisions, that they attempt risky treatments while knowing that the patient may suffer from the aftermath of those treatments. The frustration and guilt that caregivers experience in such situations are justified and understandable, and there is always the alternative of requesting that the patient see another caregiver who feels comfortable about providing care despite the patient’s refusal of certain treatments. As caregivers, we agree to treat people, not just bodies. We have to respect the way that those people see themselves. This agreement, once made, requires abiding by a patient’s decisions even when they conflict with our own understandings and beliefs. In the end, it is important to acknowledge the complicated emotions evoked by such cases, examine why these situations so greatly affect us, and explore how they might help us to redefine our own understandings of compassionate care.
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