Ethical Case Studies in Hospice and Palliative medicine. MEDICAL ETHICS A set of moral principles that apply values and judgments to the practice of medicine.
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Jaffe, Emily and Knight, Carol. “Ethical & Legal Dimensions of Treating Life-Limiting Illness” Unipac 6, Third Edition, Hospice and Palliative Care Training for Physicians.
5. I will preserve the purity of my life and my arts.
6. I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art.
7. In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.
8. All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.
9. If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.
Many ethical principles are not in themselves really debatable: EXAMPLE
But become problematic in specific circumstances
Many ethical dilemmas occur when two ethical principles collide
American society has placed great weight on the freedom of choice of the individual. Each patient as a competent adult, who should be given full information to understand the situation and the options, may choose his own course of action.
Does not mean he may choose treatment which is not offered such as demanding surgery for lung cancer when it is not recommended.
It is understood that the individual is the only one in his place, with his knowledge of his life, history, and values.
IMPORTANT DRIVER FOR HOSPICE MOVEMENT
2. Principle of Beneficence
Doctor is expected to act and advocate in the best interest of the patient despite any influences to the contrary. Physician must act to aid acutely injured, strive to cure illness, provide comfort to dying. Do good, act in the best interest of the patient.
One of the most important driving principles of ethical behavior for physicians.
3. Principle of Non-Maleficence “First do no harm”
Any action to be taken should be free of potential harm to the patient. Physician may recommend treatment which has some risk if the alternative is worse.
Important counter to excesses of beneficence.
Previously felt to limit physician ability to control pain with sedating or opioid medications.
4. Principle of JUSTICE
Synonymous with FAIRNESS
Fair distribution of scarce resources (distributive justice)
Respect for people’s rights (rights based justice)
Respect for established law (legal justice)
Rhonda B. 39 yo woman transferred into our area from Ann Arbor. She has been prescribed expensive medications for her idiopathic pulmonary fibrosis and pulmonary hypertension, but is not able to afford them. She has been in and out of the U of M hospital 3 times in last 4 months. She has continuous oxygen and MKPI of 50%. Dyspnea and cough are disabling. She states that she has been repeatedly told her prognosis is less than one year, especially if she continues to be noncompliant with medications. She asks for hospice admission.
What is the source of conflict here?
What should the hospice doctor do here?
“The state as parent," a common law principle, which authorizes the state to act as a benevolent parent to protect its citizens who are impaired and cannot protect themselves. It allows for government entities, including APS, to initiate both voluntary and involuntary services for individuals who cannot protect themselves.
The right to autonomous decision-making must also be weighed against the State's interest in preserving and protecting life and property. The principle of police power gives police the authority to curtail and control certain personal behaviors to protect the public welfare, as well as individuals. Police may intervene to protect individuals and the community from physical harm or the threat of harm, loss of assets and property, and public nuisances.
Examples of beneficence vs. autonomy
Nursing home setting:
Patient has little awareness of situation, has no ability to find food, prepare it or bring it to her mouth, but has ability to swallow.
American current cultural norms insists such person should be fed by hand or by whatever means so that she be kept from losing weight. What is the principle at work here?
Do we agree with this?
Contemporary American culture puts premium on this also.
Patient must be informed of his diagnosis and prognosis unless he specifically requests not to be told.
Discussion should be in appropriate language, appropriate timing and allow appropriate time to consider if choices are to be made.
Patient may designate a surrogate who will be given full information for decision making purposes.
If the patient is not capable of making decisions a person may be designated to do so, may be a family member or legal guardian.
Released again into the son’s care, patient returned home, where the two continued to feud. Over the next four weeks RN finds pt not fed or properly clothed, no food in the home, and fecal soiling in living room. Patient appears drugged and is rapidly losing weight. Son states pt cannot be trusted and might harm him in the night. He is putting haldol in patient’s drinks.
What should the hospice team do?
Guardian is notified that the son is not providing proper care for patient and against the wishes of both, pt is moved to assisted living facility.
In assisted living, patient no longer requires sedative medications, weight stabilizes, but he continues to be wheelchair bound and forgetful. Despite his medical stabilization, he appears depressed. He often states his wish to go home to live in his own house again. When strength allows he packs his bags in hopes of leaving, and is disappointed when he is not allowed to go home. Son also asks repeatedly for father to return home. Guardian and hospice staff hold fast to the decision to keep him in AL.
Pt’s doctor says, “We added a reel to his life, but it’s a reel of blank tape.”
Further reading: Michigan Guardianship and Conservatorship Handbook.
What can a nonfamily legal guardian decide for patient?
Where to live. (location of treatment)
How to spend money.
What they may not legally decide:
To refuse medical treatment
To stop life sustaining medical treatments
Can a family member MDPOA or next of kin make decisions re withdrawal or refusal of care? YES in most cases if pt is terminal or on Medicaid.
Is it ethical to assist such a family and patient by providing hospice care (with no other terminal disease than alcoholism) or whether we ought to limit our involvement to advising the family to stop assisting the patient in drinking alcohol, and recommend alcohol treatment? The committee identifies end-stage alcoholism as appropriate and eligible life-limiting illness for hospice care. Evidence of functional, physical and behavioral decline are consistent with eligibility. Clinical Issue: Ensure Eligibility.
• The team’s responsibility is to educate the patient/family about their options for care, not to give advice regarding their choices. Clinical Issue: Provide Education. Ethical
Principle: Respect Autonomy.
2. We might say it is the choice of the adult patient to die of alcoholism, but is that a competent choice when they are inside the addiction? • The committee believes that being alcoholic and being competent are not mutually exclusive. Competent people are allowed to make bad decisions.
Is the answer dependent on whether they have previously tried and failed in rehab? • No. If the patient is competent and aware that rehab is an option now and does not choose it, their history is not relevant. We have to respect that people do the best they can, given what they have in life.
Ethical Principle: Respect Autonomy
CeCe is a 37 yo woman whose difficulties with the medical world started at age 5 when she developed precocious puberty. She was taken from one hospital to another for rounds of tests and treatments, no one ever discovering the cause of her unusual situation. Her mother had a history of substance abuse and emotional instability which in retrospect clearly played a large role in the serious emotional instability that developed in the patient.
At 12 she ran away and was later found to be a prostitute in New York City. Her history of substance abuse, victimization, and medical noncompliance became lengthy. At age 25 she began using prescription methadone rather than illicit drugs and alcohol. She had two children and a divorce, had violent altercations with her two daughters leading to restraining orders against at least once each.
Patient developed colonic obstructing adenocarcinoma at age 35 and had a partial colectomy. No evidence of metastatic disease, but she neglected her follow up appointments. After the surgery she developed enterovaginal and entero vesicular fistulae which caused chronic discomfort, vaginal seepage of liquid feces, and chronic urinary tract infections.
Despite the discomfort, she did not follow up with plans for treatment due to fear and distrust of the medical system.
At this point she was chronically depressed, living alone, unable to support herself. Had minimal family support, methadone habit.
In December 2010 she went to ER due to shortness of breath and was found to have some pulmonary infiltrates which could be infection, but were said to be suspicious for metastatic cancer. With her h/o colon cancer, poor quality of life, and dislike of procedures, she refused the biopsy and referred herself to hospice with presumptive diagnosis of metastatic colon cancer.
She certainly did need help. The majority of her problems were not fixable. She was certainly uncomfortable.
WHAT SHOULD THE HOSPICE DOCTOR DO NOW?
Pt was on hospice two months without significant change in her status when a repeat CT scan was obtained. No evidence of the prior infiltrates found.
WHAT SHOULD THE HOSPICE DOCTOR DO NOW?
Pt was re-assigned to a local primary care doctor and discharged from hospice care.
With much difficulty for the hospice staff.
Three months later she called again. She had been in ER again and had pneumonia. Could she be readmitted to hospice care? No.
The hospice team felt very sorry not to be able to help her.
All the time we had known her, she was chronically unhappy, did not want any more medical intervention for any reason, and was whole heartedly in favor of DNR.
October 2011: Patient herself called from hospital and stated she had been in ICU and wanted to be released to hospice care.
After evaluation of the situation it was found that she had been admitted in an obtunded state suffering from new acute leukemia. Her daughters had agreed to a rapid induction chemotherapeutic regimen which was now in day 3.
Patient called again saying that she was bleeding from her mouth and nose and did not want to be in hospital any more. Asked for hospice admission instead! She said the oncologist there would not allow her to leave and was going to get a psychiatric consultant to declare her incompetent.
Friday afternoon a psychiatric consultant came to see her. She refused to speak to him. He wrote orders to transfer her to the locked psychiatric ward by force if necessary.
Over the weekend she was kept in the locked ward.
Monday morning the oncologist spoke to the patient and she agreed to go back on chemotherapy. She was transferred out of the locked ward.
Chemotherapy was continued.
The hospital planned to pursue appointment of a legal guardian.
Patient died in ICU in hospital having spent the last 4 weeks of her life in hospital.
What ethical issues were at work here?
What were the conflicting principles?
Complex thorny dilemmas cannot be reduced to simplistic formula answers.
With many competing claims and values solutions are not always clean and easy
Respect and Communication are key
The process can be positive/satisfying to all involved even if the result is not what a particular individual would have chosen.