What May We Do? Ethical Permissibility in Medical Decision-Making

1. What May We Do?Ethical Permissibility in Medical Decision-Making Michael McDuffie, Ph.D. Department of Philosophy California State University San Marcos (No financial conflicts of interest to report.)

2. Objectives of this workshop • Examine the idea of ethical permissibility as an operative concept in medical decision-making; • Propose the concept of permissibility mapping as the discursive process by which shared decision makers locate and coordinate care and treatment options that are ethically and legally available; • Consider fictionalized cases that illustrate the need for such mapping, when patients and family face ethical confusion and uncertainty. • Discuss the health care chaplain’s role in such discussions.

3. Can vs. May • Medical Decision Making (MDM) involves questions of what can be done and what may be done. • What can be done for the patient? • Clinical judgment: medicine, nursing, social work, chaplaincy, etc. (Jonsen and Siegler, 2015) • Goal: propose beneficial treatment and care options • Draw from clinical experience and multiple stocks of knowledge, research, data, testing, etc. • What may be done for the patient? • Legal, ethical, and moral judgment • Goal: Propose permissible treatment and care options • Draw from law, ethics, morality: different concepts, categories, and measures of permissible action

4. Medical Decision Making • Should correlate what can be done (as determined by clinicians) and what may be done (as determined by shared-decision-makers) (“Boxes” one and two: Jonsen and Siegler, 2010) • Challenge: What may be done, ethically and legally speaking, in general terms, is often unknown to those who face serious medical decisions, as patients and as surrogates.

5. Case Number One David Carson was 28 years old, single, working in sales, and enjoying his business success through a life rich in travel, sporting activities, lively friendships, and the security of a strong extended family. Unfortunately, Mr. Carson suffered a skiing accident that left him with a traumatic brain injury and a cervical spine injury. After he was rescued, placed on a ventilator, and stabilized, it was determined that Mr. Carson would remain quadriplegic and ventilator-dependent. He suffered significant anoxic brain damage in the time after his accident. After a few days, Mr. Carson emerged from coma, but he demonstrated no awareness, and was determined to be in a persistent vegetative state. Mr. Carson’s parents and doctors waited and watched for over two weeks, but he showed no neurological progress. At this point, Mr. Carson’s physicians met with his parents to discuss goals of care, long-term prospects, and step-down treatment plans. Mr. Carson was still ventilated on an endotracheal tube, and if he was to continue to receive treatment, he would soon need a tracheostomy for long-term respiratory support and a PEG tube placed for nutrition.

6. Case Number One (cont.) Mr. Carson’s parents were resigned to the situation, after three weeks bedside with their son, but they were defeated, thinking what it meant for David and his future. Especially Mrs. Carson: If only he were with us, she thought---awake and aware, aware and himself. She knew his strength and spirit, and how he’d likely respond to his injuries, if only he were here. He never knew how to quit. But the idea was devastating, that he would not come back, never be himself, never have the presence to summon that courage. At best, they were to hang their hopes on something called a “minimal conscious state.” That day, when the doctor asked what they thought David would want from his care, they hesitated. “If only he had died on that mountain,” Mrs. Carson said. “It would be better than this. He wouldn’t want to live like this, on all these machines, not even knowing it. That’s no life for him.” Silence, and then: “Why didn’t God just take him? Why did He leave him this way? Why would He do such a thing?” A moment passed, and the doctor ventured to speak. If the Carson’s thought it was what David would want, she could take him off the ventilator, with their permission, and “let him go.” At that point, though, Mrs. Carson turned, disbelieving: “That’s the only thing keeping him alive! I know he wouldn’t want all this, but you cannot ask me to kill him! I can’t kill my son, even if he’d want me to.”

7. What May We Do? • As a matter of legal and bioethical consensus (in a case like this): • Withdrawal of life support is not ethically equivalent to killing the patient.(AMA, 1992) • Withdrawal of life support is ethically permissible if the action is consistent with the patient’s known preferences or best interest. (Ibid.) • When life support is withdrawn, the patient’s death is caused by her underlying illness or injury, and not the withdrawal; those who remove life support (with appropriate consent) are morally culpable for neither the underlying condition nor the patient’s demise. (Ibid.)

8. What May We Do? • Thus, one might say, Mrs. Carson (in Case One) is apparently confused, uninformed, or inexperienced, and should be given information and support. • This finding relies upon a sense of general ethical permissibility: • One’s sense that an action or type of action is considered permissible as a matter of broad consensus in mainstream bioethical theory and practice. • If Action A is ethically permissible, it is an available option; it may not yet be the “right” option. (Necessary but not sufficient condition.)

9. Ethical Permissibility • Expresses our general sense of what may be done as a matter of broad, mainstream bioethical consensus. • Operative concept in MDM (i.e., a means of thinking vs. object of thought). (Fink, 1957) • Descriptiveattribution, vs. prescriptive evaluation. (“Action Aiswidely considered ethically appropriate” vs. “Action A is ethically appropriate.”) • Correlates with distinct operative concepts of legal and moral permissibility (construed as individual, personal morality).

10. Ethical Permissibility • Grounded in social practice and interaction: • Presumes established body of conventional bioethical doctrine: socially constructed stock of knowledge at hand (Schutz, 1953) • Socially constituted, typified “recipes for action” with “interpretative relevance” for problem solving and decision making (Schutz, 1945; Schutz 1953; Schutz, 1970; Natanson, 1986) • Tied to aparticular discourse community of shared projects, goals, and relevances(Cf. “local knowledge”) (Geertz, 1985.) • Plays a mediating role in deliberation • Point of contact and negotiation between abstract ethical principles and individual situations and cases • Means of correlating individual values, preferences, beliefs to a table of ethically available actions/action patterns • Provides orientation to those inexperienced with medical decision-making, in laying out a sense of “what may be done” in “cases like these.”

11. What may we do? • MDM correlates different concepts and judgments of permissibility • Legal • Ethical (bioethics, professional ethics, social ethics) • Moral (personal morality as expression of individual values, belief systems, and moral character) (Hegel) • MDM is hindered by: • Ignorance of operative legal, ethical, and moral standards; • Misperceived conflict or competition between these fields of permissibility. • Spiritual and moral distress distress that result from ethical disorientation and abandonment: the sense that one’s compass is spinning.

12. Permissibility Mapping • Discursive process through which shared-decision makers talk through and locate: • Legally available options; • “Ethically permissible” options (as defined above); • Morally acceptable options(as determined by patient or substituted judgment). • Goals: • Articulate all options that are legally available and “ethically permissible”; • Confirm that patients/surrogates understand these options and their legal/ethical grounding, to the extent needed; • Assist patients/surrogates in sorting out the patient’s personal preferences and aligning these with legally and ethically available options; • Allow the discussion and decision to be led by patient preferences, as much as possible.

13. From here: Fill in the circles

14. To here: Align the options

15. Case Number Two Oscar Ortiz is a retired masonry contractor, 72 years old, who enjoyed an active independent life in strong good health. He loves boating, fishing, and golf, all in the company of his fiancée, Maria, his companion of two years. Mr. Ortiz’s first wife died a decade earlier, after a long illness. (He never talks about it.) The Ortiz’s never had children, and Mr. Ortiz’s only family is his older sister, long estranged, and her son, his nephew, with whom he maintainscordial, if infrequent contact. Nearly three weeks ago Mr. Ortiz suffered a massive, near-fatal stroke. He is now in the hospital, in stable condition, but completely hemiplegic and nonresponsive, in a vegetative state. He has made no neurological progress since his injury. He is not expected to recover awareness, but he is otherwise stable, receiving caloric support through a PEG tube. The day of his stroke, Mr. Ortiz was at home with his fiancée, Maria: collapse, ambulance ride, ED. Mr. Ortiz was stabilized, assessed, and transferred to the neuro unit, unconscious but no longer in imminent danger. There, the neurology resident interviewed Maria, thinking about next steps. As far as Maria knew, Mr. Ortiz had no advance directive, and hadn’t named a DPOA. And they’d never talked about anything “medical”---she had no idea… When Maria was asked about next of kin, she found a phone number for Oscar’s nephew, Carlos. The doctor contacted Carlos, hoping for information and a surrogate to provide any needed consent. They talked about Uncle Oscar. He was something of an occasional Catholic; he identified himself as such, but wasn’t very observant. Occasional masses, on the holidays, and confessions? Who knows?! But Carlos told the doctor that his uncle once told him about the movie “with that lady boxer” (Million Dollar Baby). His uncle liked that movie and “got all harsh” about “dying like a vegetable on tubes and machines and all that.” (Carlos also thought his uncle’s feelings went back to his aunt’s illness and death, but wasn’t sure. Uncle Oscar never talked about it.) That day, given his uncle’s condition, and given those statements, Carlos consented to a DNAR.

16. Case Number Two (cont.) A few days after the stroke, Carlos called the hospital and spoke to a second doctor, the hospitalist currently caring for Mr. Ortiz. This time Carlos asked about artificial feeding. Maria (his uncle’s fiancée) had contacted Carlos and begged him to ask about a feeding tube and “give your uncle a chance to get better and live instead of starving him to death.” Carlos understood that his uncle’s recovery was extremely unlikely, but he wasn’t comfortable “euthanizing him by starvation.” He said he had a friend who was a hospice nurse, so he “knew a lot” about feeding tubes, and didn’t think it would do any harm. At his insistence, the doctor ordered placement of a PEG tube. It is now two weeks later, and a nurse case-manager is working on Mr. Ortiz’s discharge to a SNF. He is tolerating the tube feedings, but shows no neurological progress. When the case manager sees a note in the record, detailing the neurology resident’s discussion with Carlos, the day of the injury, she is surprised and dismayed that the PEG tube was placed. She contacts the chair of the hospital ethics committee and requests a consult: She fears that Mr. Ortiz is now receiving inappropriate, unwanted, and non-beneficial treatment, and once he is transferred to a SNF, he will languish and be subjected to a needlessly prolonged death. After reviewing the case, the ethics consulting team shares those concerns, and requests a meeting with Carlos.

17. What May We Do? • Mainstream bioethics consensus: • Substituted judgment should not be unduly diverted by concern for another party’s interests (fiancée); (Beauchamp, Childress, 2013) • Withholding of ANH does not constitute “euthanasia by starvation.” Withdrawal of PEG tube is ethically permissible, if consistent with patient’s known preferences or best interest. (AMA, 1992; Brody, 2000; Quill and Byock, 2000; Brody et al., 2011) • Generally, refusal of ANH is ethically permissible; ethics consultation should review surrogate duty to provide faithful substituted judgment. • Permissibility mapping: Refusal of ANH is legally available and “ethically permissible.” Is it consistent with patient preferences? • Factors: Known statements RE EOL care; Catholicism (Brody et al., 2011)

18. Case Number Three Mrs. Evelyn Martens, an 81-year-old widow, is in the hospital, being treated for complications from late-stage small-cell carcinoma. The cancer has metastasized to her ribs, liver, and brain, and she suffers from continuous severe pain. Standard pain control measures have grown less effective, and she is agitated and increasingly difficult to manage. Mrs. Martens also suffers from late stage dementia. She is well past the time when she could make her own medical decisions. While still competent, nearly four years earlier, she filed an advance directive, changing her code status to DNAR and naming the oldest of her three daughters as her DPOA. The advance directive was otherwise not very detailed, and Mrs. Martens asked her daughters to try to work together and agree on their decisions. Mrs. Martens, before her illness, was a regular churchgoer, attending a fairly liberal Methodist congregation, and seemed confortable in her faith. A decade or so earlier she nursed her husband through his own fight with cancer. She watched him put up an aggressive fight against his illness, only to die after an emergency admission to the ICU. After that episode, she told her daughters time and again that she would never want such treatment for herself. "Nothing crazy like that," she'd say. When her cancer was diagnosed a few months ago, already advanced, her oldest daughter (the DPOA) was certain that her mom (as she was, in the old days, as herself) would not want aggressive treatment---"especially with the Alzheimer's”---and she declined chemotherapy. Now, however, the disease has progressed, and Mrs. Martens is nearing death. Her breathing is difficult and labored. Her pain appears intense, evident in multiple locations, and her state of mind is seriously deteriorating. It looks like her death could be very difficult for all concerned.

19. Case Number Three Mrs. Martens’ daughters are now meeting with their mother’s physician, as well as a palliative care team. The daughters are discussing options for Mrs. Martens' care, now that the end seems near, and they are having trouble agreeing on what to do (or not do). All three are concerned about their mother's continuing pain and discomfort, but they react differently when the doctor introduces the possibility, as a last resort, of palliative sedation to unconsciousness. Two of the sisters are interested in hearing more about it, but June (the youngest, who has flown in a few days ago from her home across the country) angrily objects, saying, "Why are you all so quick to give up on Mom? You wouldn’t fight the cancer while there was still a chance, and now you want to give her the needle! Mother never wanted machines and ICU's and all that, but she didn’t tell us to kill her. She just wanted to die with some dignity!”

20. What May We Do? • Mainstream bioethics consensus: • Palliative sedation to unconsciousness (PSU) is legally available (O’Connor opinion, 1997, Vaccov. Quill/Washington v. Glucksberg) • And ethically permissible, under “double effect” reasoning, as a treatment of last resort for truly refractory pain; (AMA, 2008; Quill and Byock, 2000; Olsen et al., 2010) • Ongoing debate RE PSU as ethically permissible treatment for existential suffering. (Cassel, 2010) • Contra youngest daughter: PSU is not ethically equivalent to active euthanasia, due to difference in intent of actions (per “double effect”) (AMA, 2008) • Permissibility mapping: • Clarify the legal availability and ethical permissibility of PSU; • Align with patient’s preferences and goals of treatment; reinforce standard of substituted judgment; • Provide emotional and spiritual support for surrogates.

21. Case Number Four Richard Hawkins, at 67 years of age, was scaling back his busy career as an architect and planning a weeks-long vacation across Scandinavia, when he learned he had pancreatic cancer, already taking hold in other parts of his body. “Those plans might have to wait, I’m afraid,” said the oncologist, as he and Mr. Hawkins reviewed the test results. Hawkins nodded, stared down at the floor, and said, “Let’s talk about my options.” The oncologist began, in even tones, to talk about the late catch, too late for surgery, and the staging of the growth, already advanced, so “all we have are some chemotherapy options that might slow things down,” when Hawkins interrupted. “No,” he said. “I know this disease. I know what it does, and how fast it moves. I knew this guy… I’m not interested in those options. I want to stay as strong as I can, for the time I have. And above all I want to stay in control. I’m thinking of THE option---the one at the end---the new one we have in California.” The doctor shifted slightly in his seat, and said, “Well, you have that right, I suppose. It’s legal now….” He trailed off. “You have that right,” he resumed. “But for me, I wonder if it’s right, for me as a doctor. It’s all too new. We’re just now figuring it out for ourselves---our practice---whether we’ll opt in and participate, or not. I guess it’s up to the individual, and we all have to figure it out.” He frowned at some thought passing through his own head, and then remembered where he was. He looked at Mr. Hawkins. “Do you have, like, a pastor or a priest or somebody you could talk to about this? Or maybe your primary care doctor? I’m not sure this is the kind of conversation I can help you with, at this point.”

22. What may we do? • Lack of consensus in mainstream bioethics limits utility of “ethical permissibility” as operative concept • Shared-decision makers must mediate between patient preferences, values, and beliefs, and general bioethical principles, without the intermediate category of “ethically permissible actions.” • Participation of spiritual care providers in permissibility mapping intensified in such cases? • Values clarification, “authenticity” of option, palliation of spiritual distress? • Oregon data: not about fear of pain and suffering, but autonomy, dignity, independence: symptoms of spiritual distress? • https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx

23. References AMA, Council on Ethical and Judicial Affairs. “Decisions Near the End of Life,” JAMA, V. 267, n.16, April 22/29, 1992. AMA, Council on Ethical and Judicial Affairs. “Sedation to Unconsciousness in End-of-Life Care,” Report 5-A-08, June 2008 (accessed 3/24/2016): http://www.ama-assn.org/ama/pub/about-ama/our-people/ama-councils/council-ethical-judicial-affairs/ceja-reports.page Beauchamp, Tom L.; Childress, James F. Principles of Biomedical Ethics. Oxford University Press, 2013. Brody, Howard. “Evidence-based Medicine, Nutritional Support, and Terminal Suffering,” Am J Med. 2000; 109: 740-741. Brody, Howard; Hermer, Laura D.; Scott, Larry D.; Grumbles, L. Lee; Kutac, Julie E.; McCammon, Susan D. “Artificial Nutrition and Hydration: The Evolution of Ethics, Evidence, and Policy,” J Gen Intern Med 26(9) March 2011: 1053-8. Cassel, Eric J., and Rich, Ben A. “Intractable End-of-Life Suffering and the Ethics of Palliative Sedation,” Pain Medicine 2010; 11: 435-38. Fink, Eugen. “Operative Concepts in Husserl’s Phenomenology,” in Apriori and World, edited by McKenna, Haraln, and Winters. Nijhoff, 1981. Geertz, Clifford. Local Knowledge: Further Essays in Interpretive Anthropology, 3rd Edition.Basic Books, 1985.

24. References Hegel, G.W.F. Phenomenology of Spirit, V.B.2, 1807. Jonsen, Albert; Siegler, Mark. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. McGraw Hill Lange, 2015. Natanson, Maurice. Anonymity: A Study in the Phenomenology of Alfred Schutz. Indiana University Press, 1986. Olsen, Molly L.; Swetz, Keith M.; Mueller, Paul S. “Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments,” Mayo Clinic Proc. October 2010; 85(10): 949-954. Quill, Timothy E.; Byock, Ira R., for ACP-ASIM End-of-Life Care Consensus Panel. “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids,” Ann Intern Med. 2000; 132: 408-414. Schutz, Alfred. Collected Papers, Volume I. Nijhoff, 1962. --”Common Sense and Scientific Interpretation of Human Action” (1953); --”On Multiple Realities” (1945). Schutz, Alfred. “Reflections on the Problem of Relevance,” edited by Richard M. Zaner. Yale University Press, 1970.