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Forgoing Medical Therapy |
There are five cases in this "Forgoing Medical Therapy" module. Each case is written in a context relevant to this module. The first case, Mrs. Gregory is a common case that can be found in other topic modules also. The common cases are illustrated with video and audio clips. Example explanations for some cases are included. They can be used as a reference to evaluate your students� responses. Case 4, Mr. Leary, can also be found in "The Nurse�s Role" module. Case 1: Mrs. Gregory Case 2: Jean - Assisting suicide or supporting autonomy? Case 3: Ernie Jones - Refusal of treatment? Case 4: Mr. Leary - Killing or allowing to die? Case 5: Mrs. Abel & Mrs. Cain - Whose interests take precedence?
Mrs. Gregory is a 62-year-old woman who has been a patient for many years at the office where you work as an office nurse. For the past few months, she has complained of increasingly severe upper abdominal pain and weight loss. An ultrasound ordered by Dr. Minor revealed a mass highly suspicious for primary liver cancer. Mrs. Gregory and Gloria, the youngest of her three daughters, come to Dr. Minor�s office to discuss the test results. Dr. Minor discussed the test results, but you were with another patient. You know the family well and expect Mrs. Gregory to understand what Dr. Minor told her, and you plan to instruct her on use of the pain prescription Dr. Minor wrote for her. However, while clarifying her understanding about her illness, Mrs. Gregory becomes resistant. She tells her nurse that there�s nothing wrong with her. She says, "All I need is some herbal remedies to help ease my indigestion." She leaves after agreeing to try the pain pills suggested by Dr. Minor. Clearly upset with her mother�s behavior and attitude in facing a terminal illness, Gloria, seeks your advice. She wants her mom to confront her disease and the fact she�s dying. However, her two sisters strongly disagree, and tell Gloria they will never speak to her again if she continues to force their mother into confronting her prognosis. Mrs. Gregory continues to avoid discussing her apparent diagnosis of primary liver cancer and poor prognosis. She becomes increasingly distressed by the physical changes that are a part of her condition such as ascites, jaundice, and bruising. In addition, she has become increasingly distraught about the actual process of dying. At times she cries inconsolably when the subject of her death is broached. The only time she seems at peace emotionally and spiritually is when she is sleeping. When her physician asks her if she is in pain, she consistently replies, "Yes, I am in agony, but you won�t help my kind of pain. The only thing that would help would be to just escape this, to be a zombie through it all." Her daughters continue to be in conflict over how this aspect of their
mother�s situation should be handled. Gloria wants her mother to be forced
to go to a psychologist and to deal with the underlying issues that make
her fear of dying and mortality so overwhelming for her. In contrast,
Mrs. Gregory�s other daughters reflect that their mother has always been
very uncomfortable with death and with the physical changes that occur
with terminal illnesses. They argue that their mother should not be forced
to address these longstanding issues now but be accommodated in her denial
and avoidance of the issue. They ask the physician if he can help their
mother to just "sleep through this whole process as much as possible."
Jean is a 28-year-old woman who has had juvenile onset diabetes since age 5. While she has been a nearly ideal patient, her condition has been quite brittle. Consequently, she is now near blind, has significant peripheral neuropathy and increasing renal compromise. She was admitted to the hospital 10 days ago for amputation of her right foot due to vascular compromise and infection. Jean's parents are dead and she has no siblings. She is unmarried but has a long-term significant other. Jean used to be a modern dancer and agreed to the amputation of her foot only with the understanding that she would be able to walk again with prosthesis. After 10 days, the stump is not healing due to poor circulation and must be revised to above the knee. In addition, the condition of her left foot has worsened with inactivity and the stress of surgery. The surgeons recommend amputation of that foot as well. After listening carefully to the explanation about the surgery, Jean replied to her primary physician (who she has known for 9 years), "I will not consent to further surgery. I am clearly at the end of this. I want to have my insulin drip discontinued tomorrow after I have had a chance to say goodbye to David and my friends. I'm smart enough to know that it will be a heck of a lot quicker and less painful to die of ketoacidosis than this septic foot." Jean's physician is shocked. He says he feels like he would be helping her to commit suicide. Some of the nurses caring for Jean also are very distressed by this request. Other nurses think Jean is doing exactly what they would do if they were in a similar situation. What is the right thing to do? What issues are important here? Ó Adapted from a local case.
Example Explanation: This case is to illustrate the patient�s right to refuse life-sustaining therapy � even when the patient would not readily be identified as terminal and the therapy be considered life-sustaining. In this case, based on a real situation, the woman was eventually supported in her decision and died peacefully and quickly with her loved ones at her bedside. The patient had clearly decided that her quality of life no longer met her minimum level and that she was beginning the final phase of her chronic condition.
© Adapted from a case by Jeffrey Spike, Ph.D., Rochester, New York. Used with permission. Ernie Jones is 32-years-old and a recent quadriplegic. Like many who suffer a sudden trauma that leads to severe disabilities, he has been discouraged, angry and withdrawn at times . . . but always mentally competent. While Ernie cannot move his arms or legs, he can shrug his shoulders, breathe without assistance and swallow adequately to receive his nutrition by mouth. In the past he has had several bouts of respiratory compromise secondary to pulmonary infections. These bouts have required nebulizer treatments, oxygen by mask, and suctioning in order to resolve. It is unclear whether this pattern of respiratory problems will persist. Ernie is fully cooperative with eating and swallowing pills that include medications to control spasms, pain medications, and occasionally antibiotics. However, he steadfastly refuses to be cleaned and bathed after having an incontinent bowel movement. He is willing to have the bed linens changed. He states that he wishes to preserve his dignity and privacy by not being forced to be cleaned up against his wishes. He understands that this refusal may lead to skin breakdown that is life threatening and states that he would not want aggressive therapy if that were to occur. He begs to be left alone. When he is cleaned up against his wishes, he yells loudly at the staff to stop. The nurses are not sure about what to do. They are concerned that Ernie�s refusal may be a protest, a show of anger, or acting out. The hygiene problems are likely to lead to skin breakdown and the patient�s death, but are completely preventable. Patients can refuse treatments that lead eventually to death, so why is this any different? Some argue that this is not a medical treatment, just basic humane treatment . . . but does that mean Ernie can be forced to receive this care? That argument does not convince most of the nurses. They argue that the needs of others is a justification -- the roommate complains of the smell and it makes the care providers feel badly to not provide something that is simple and life-sustaining . . .but since when can the needs of others override a competent patient's wishes about treatments which involve touching (and intimately) the patient's body? ©Adapted from a case by Jeffrey Spike, Ph.D., Rochester, New York ©Adapted from a case by Jeffrey Spike, Ph.D., Rochester, New York
Example Explanation: The case is intended to discuss the issues of autonomy and patients� rights to refuse therapies. Competent patients have the legal right to refuse any therapy including life-sustaining therapy. But in the controlled environment of healthcare, patients routinely have "little" things done to them against their will. Nurses tend to be very critical of physicians who discourage patients or families from stopping aggressive therapy. These nurses often believe that the physician sees a patient�s death as a failure. However, when presented with this case, nurses tend to react very strongly that the patient cannot be allowed to refuse this "basic" care. Their reasons tend to fall into several categories, which you may want to allow emerging in a discussion format and then address the issues around each.
© 2001 Shannon, S.E. Reprinted with permission from Sarah E. Shannon, PhD, RN Mr. Leary is 76 years old and had his first stroke three months ago. It was severe but he was making progress when he suffered a second stroke. After this stroke he was quite depressed and aphasic with left-side paralysis. Three weeks ago he suffered a third stroke. While it worsened his physical condition somewhat, this third stroke seemed to improve Mr. Leary's mood. He is cooperative with care now, even attempting to assist with shaving each morning. Mr. Leary has no swallow reflex. Consequently, he has a Keofeed tube in place to administer nutrition and hydration, which is tolerated well. His physician wrote that his prognosis for survival was probably less than a year due to the probability of continued cerebral events--but he might live as long as three to five years. Mrs. Leary is overwhelmed. Two nursing homes have been located by the social worker but she refused each. One was too far from their home (75 minutes drive) and one was too awful (the social worker concurs). In the three months of hospitalization since Mr. Leary�s first stroke, he has occasionally had a "no code" order. However, when his condition stabilizes he is changed to a partial code. These changes apparently follow discussion between the physician and Mrs. Leary although this is not recorded in the chart. The nurses have overheard conversations between the doctor and wife regarding the appropriateness of aggressive care. On Thursday, Mrs. Leary was approached by a person from the hospital business office to inform her that on Monday Mr. Leary would be decertified by Medicare and that she will be responsible for the hospital charges as of that date. On Friday, Mrs. Leary called the physician and asked that the Keofeed be withdrawn, something they had discussed on other occasions but which Mrs. Leary had previously refused. The physician phoned the unit and left a verbal order to remove the Keofeed and discontinue feeding. The nursing staff was very upset and called the physician back to discuss the order. He stated that, "this is congruent with the patient's stated values prior to the first stroke. The patient asked me not to "'over do' it." The Keofeed was pulled Friday afternoon though the nurses remained very distressed. On Sunday morning, the patient reached for a glass of water sitting by the bedside for mouthcare (apparently from thirst) and aspirated. By Monday pneumonia was evident. Over the weekend arrangements have been made to transfer the patient to home to be cared for by his wife. Mrs. Leary is nearly hysterical. She had not been participating actively in her husband's care and now realizes that she is physically unable to provide total care including turning, positioning, etc. Mr. Leary is discharged to home Monday afternoon significantly febrile. He dies late Monday evening. Ó Adapted from a personal case.
Two 72-year old women, Mrs. Abel and Mrs. Cain, have been admitted to the ICU following significant cerebrovascular accidents. Both patients have spouses who are in good health, two adult daughters, and several young grandchildren. Both families have similar financial resources. The prognosis for each patient is that she will require long term support of basic ADLs since each is hemiplegic, dependent on tube feedings, incontinent of urine and stool, and has receptive and expressive aphasia. Each family is faced with a difficult set of decisions including: withhold tube feedings and provide comfort care until death (probably within days to weeks); provide full supportive care and seek nursing home placement (requiring the spouse to impoverish himself and eventually go onto Medicaid funding); or have one of the adult daughters quit her work and care for her mother in her home. Mrs. Abel has always been a giving, devoted spouse, mother and grandmother. She has consistently put the needs of others before hers throughout her life. Mrs. Abel�s husband and children adore her � they spend as much time as possible with her. Both daughters have frequently offered to have the parents live with them as they grow older, specifically offering to care for their older parents both financially and directly. For both daughters, this arrangement would mean a financial struggle for their own family. Mrs. Abel has been an uncomplaining woman, coping cheerfully with her osteoarthritis and several other chronic conditions. Whenever faced with a medical condition that requires an onerous treatment plan, chronic pain, or disability, she has pursued treatment to maximize her health, quality of life, and mobility. However, she has frequently said that she never wants to be a burden to her spouse or daughters instructing them to just "let her go" should the situation arise where she was a "problem." Mrs. Cain has always been a selfish spouse, mother and grandmother. She consistently put her own needs before the needs of her children and spouse. Mrs. Cain�s husband decided years ago that divorce was not an option and has constructed a separate life for himself. Her adult daughters have grown to almost hate their mother because, although she is capable of driving and walking, she frequently calls them demanding that they take her to appointments, grocery shopping, etc. Both daughters feel taken advantage of by Mrs. Cain but stay involved with the intent of providing their father with some relief from her incessant demands. Both daughters work and both young families are dependent on their incomes to make ends meet. Mrs. Cain has been a trying patient whenever she has faced health problems. After being diagnosed with osteoarthritis, she became angry and miserable frequently stating that life was hardly worth living with so much pain and disability. However, she has frequently said that she wants to be kept alive for as long as possible. Specifically, she has told her family that if she needs to be in a nursing home, she would want the best care money could buy. She has said many times that her family "better not just give up on me!" ©Adapted from an article written by Hardwig.
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©2001 D.J. Wilkie & TNEEL Investigators