Abstract
JP is an 80-year-old male with prostate cancer metastatic to bone. He has had a pathologic fracture of the left distal femur and has sternal metastases. He was discovered at home unconscious, in bed, at 8 am by his daughter-in-law, his primary caregiver. She had checked on JP at 11 pm the night before, as is her usual routine.
After a thorough workup, JP was diagnosed with bladder outflow obstruction and urosepsis. His blood pressure was 60/40, Temp 102.3 degrees Fahrenheit. There was tachypnea and tachycardia; the Glasgow coma scale was 8. He became increasingly hypoxic and was intubated on day three of admission. His code status was “Full, no limitations on aggressive treatment.”
On day 7, JP was on multiple pressors and required increased oxygen and PEEP; off sedation, Glasgow coma scale declined to 6.
JP did not have a medical advance care plan. His surrogate decision-maker was his daughter-in-law, MP, and he was assigned to that role by the attending physician. JP has no living blood relatives, and his son (MP’s husband) died years ago. MP has taken JP to medical appointments, driven him to the grocery store, sat with him during chemo and radiation, and, for the last three months, checked on him multiple times a day.
On day 8 of the admission, the critical care team informed MP that they did not feel he would recover. After a discussion with the palliative medicine (“eleology”) service, MP felt that JP would not want to continue aggressive treatment and that cardiopulmonary resuscitation in the event of his demise would increase his suffering without objective benefit. She instructed the team to transition JP to a comfort-focused care plan, change his code status to “Allow Natural Death,” and withdraw mechanical ventilation and pressors. An inpatient hospice consult was placed.
Before JP could be transitioned off mechanical ventilation, however, risk management intervened, stating that MP did not have standing to withdraw life-sustaining treatment in the facility’s state. The risk management attorney quoted the state statute that allowed withdrawal decisions to be made only by patients themselves, a court-appointed guardian, a spouse, or a blood relative. The state did not provide for a non-relative who was not named in a legally executed advance care plan to decide to withdraw or withhold life-sustaining treatment and, in fact, expressly prohibited this.
While JP remained on life support, ethics, risk management, and legal were consulted to facilitate problem-solving.
Saima Rashid, MD
Patients with chronic illnesses often face overwhelming amounts of information throughout the trajectory of their disease. In addition to disease-focused care, clinicians should explore the role of advance care planning (ACP) for a comprehensive treatment plan, particularly in high-risk patient populations.1, 2
Advance care planning is a tool that can ensure that healthcare professionals provide care that is in line with a patient’s wishes if they lose decision-making capacity. 3 Discussions about ACP can include decisions regarding ventilation, CPR, feeding tubes, and appointing a medical surrogate if the patient loses capacity. 4 State-issued forms (e.g., MOST and POST) can help shape dialogues. Notably, clinicians should also highlight the role of the surrogate decision maker, especially if surrogates are not considered next of kin (ex, spouse, children). This would help alleviate any confusion during complex medical scenarios. In addition, communication should be encouraged between patients and surrogates regarding treatment goals and end-of-life wishes. This will help minimize additional stress and emotional burden if the surrogate has to make critical decisions on behalf of the patient. Notably, conversations regarding ACP should be revisited as patients’ clinical status changes.
JP’s case highlights missed opportunities to discuss ACP. In this scenario, JP had many encounters with healthcare professionals before being found altered. Such clinical visits are important opportunities to address ACP, as this would have ensured that JP was receiving goal-coordinated care even at the end of life when he was unable to express his wishes.
The daughter-in-law was obviously the patient’s sole caregiver and should be considered “next of kin” despite not being a direct relative. No additional family members were involved in JP’s care, which implies that she would be most aligned with JP’s best interest.
Notably, even if the legal team needed time to verify the legality of the daughter-in-law’s role as a medical surrogate, an ACP in place wouldn’t delay the care JP desired. However, JP’s comfort-focused care was delayed because ethics, legal, and risk management teams were needed to mitigate risks for the institution. Such default and rigid statuses imposed by legislature regarding code status/medical surrogacy can further complicate medical decision-making and delay appropriate goal-concordant care. For JP, this meant prolonged suffering and also invalidated the daughter-in-law’s role as a caregiver/family member.
Staff should recognize and support the daughter-in-law's role. As the caregiver, she has helped support JP and is now asked to make distressing decisions on behalf of JP. She will need encouraging and supportive communication and may benefit from counseling, chaplaincy, and/or support groups to help process grief.
JP’s state has what is meant to be protective laws in place to safeguard critical decisions such as withdrawing life-sustaining treatments. Unfortunately, these guidelines can pose unique challenges for non-relatives who serve as caregivers or surrogates. It is important to be aware of such laws and identify patients whose circumstances will be directly affected.
Scott P. Boyles, MDiv, BCC
This is a highly emotional case for almost everyone involved. Just reading it gives me an emotional reaction. The statuary aspect is reductive and too superficial for this situation. If a person is not the patient’s blood relative, court-appointed, or the patient, that person cannot make healthcare decisions. This kind of “one-size-fits-all” legislation may address most cases, but each case is unique in and of itself and requires legal remedies that take that into account. That a family member, albeit not by blood but by legal marriage and a long association, and who has been trusted by the patient to take care of them for eight years, including all medical visits, cannot make decisions on behalf of the patient seems not only unethical but unjust. MP appears to have been trusted by the patient and most likely has a comprehensive understanding of JP’s healthcare status and what he would want in terms of medical care. The medical team and risk management could easily verify this presumption.
This statute does not provide a remedy for the problem it produces—no one is readily available to make decisions for this patient. That is not only an ethical issue but also a financial one. Who pays for the current level of care if the patient does not have capacity and the one best prepared to make a medical decision for their loved one is not allowed to? I am not sure this current problem can be solved except by requesting a court-appointed guardian, which might not be in the best interests of the patient unless the MP herself is appointed, the one who knows the most about JP and his desires, or a medical professional on the team who has already demonstrated having the best interests of the patient in mind. Whoever is appointed, if it is not MP, if I were the chaplain on JP’s interdisciplinary team (or as a member of the Hospital ethics committee asked to provide guidance), I would strongly recommend having MP present for any care plan discussions to continue to be part of the conversation.
In the future, it would be necessary for the ethics committee to design a standard operating procedure or standard of work to deal with this situation when it occurs again, regardless of what statuary remedies or legislative revisions develop. This statute is inadequate to provide an appropriate surrogate or healthcare agent for patients in this situation. Suppose this statute continues to remain in effect as is. In that case, I believe it is incumbent for the powers that be of every healthcare system in the state to require the identification of a healthcare agent according to that statute and, if possible, to request the patient has a role in selecting the best person that fits the requirements of the statue. In JP and MP’s case, I believe that this statute does nothing to help this particular patient but instead adds unnecessary anxiety and distress to this patient’s loved ones and the entire interdisciplinary team taking care of them.
Andrew Wampler, Esq
Legal requirements involving who can make medical decisions for others are governed by state law, often in statutes. For many years, differences in state law have led to differing practices and uncertainty from one location to another. 5 Some states have provisions similar to or derived from model provisions promulgated by the Uniform Law Commission. 6 The commission approved a Uniform Health Care Decisions Act in 1993, and it revised and expanded the Act in July 2023. 7 The Act seeks to cover the most applicable situations, provide clear options to assure that someone can be appointed, and consider the variety of existing family structures. 8 For states that do not follow the uniform act, governing law has been developed at different stages and often with disparate influences. Because of the differences, it is essential to understand the applicable law for the facility’s jurisdiction.
In locations with statutory gaps in who can serve as surrogates, it is essential to involve risk and legal quickly if judicial intervention is needed. While it is cumbersome and expensive, a court filing may be the avenue necessary for a court to appoint a decision maker. There is a lag time with court filings even when matters are expedited; thus, quick identification of the issue and commitment to the filing is necessary.
To avoid situations like this, providers should create a process for evaluating and encouraging the selection of a surrogate or medical decision-maker while a patient still has capacity. 9 The patient can generally make such an election orally. Thus, it is essential during registration or other types of intake for a hospital to script a process to discuss such a determination when possible. Doing so puts a decision-maker in place before a patient loses capacity. The Act also has a model form many states have adopted that can be used. The form was drafted with clear, plain language to avoid the confusion that sometimes developed from the legalese and arcane language often used with prior directives.
These issues will persist as families continue to become more scattered and disconnected. Jurisdictions that have not adopted the Act should consider it for ease of identifying and empowering appropriate decision-makers. That adoption would also limit issues when health systems overlap state lines or patients from one state are admitted to another. The Act was initially developed to manage the “fragmented, incomplete, and sometimes inconsistent set of rules” facing families and providers. 10 The drafters of the Act set a process in place with an eye to efficiency around designating the proper person who can appropriately make the decisions that honor the patient’s wishes and values.
Matthew Stolick, PhD
Beauchamp and Childress’ resilient and authoritative textbook, Principles of Biomedical Ethics, in its 8th edition, makes it clear that life-sustaining treatments such as mechanical ventilation and artificial nutrition and hydration are medical treatments. 11 As with other medical treatments, they should be used only if they provide more benefit than harm to patients. The current state law is that it is forcing healthcare workers to start treatments and continue treatments that are harmful and futile. The reason for choosing treatment over non-treatment is the lack of a blood relative to authorize refusal or cessation of such treatments. However, sometimes, patients’ best interests are served not by aggressive curative treatments but rather by palliative comfort care. A significant point of their entire chapter on the principle of nonmaleficence is that sometimes it is better to do nothing or not to intervene than it is to provide a medical treatment that makes a patient even worse off than before the medical treatment; therefore, this state law will predictably lead to a violation of the principle of nonmaleficence for many patients.
The current state law, bringing ethics, legal, and risk management together, is correct in viewing the family as the default surrogate decision-makers for incompetent patients. Beauchamp and Childress recognize this: “In the absence of advance directive executed by previously competent individuals, we think of families as the proper decision makers because they usually have the deepest interest in protecting their incompetent members. 12 ” But they also stress that family members sometimes do not have such an interest. In such cases, they should be challenged. Although family members are default decision-makers, that does not mean that they are to be considered infallible in making surrogate decisions. Although family members are the default surrogate decision-makers, this does not mean they are the only ones who can effectively serve as surrogate decision-makers. Some patients will have no blood relatives to serve as their surrogates. But surely, this does not mean that such patients should go without any surrogate decision-maker. That would leave patients unprotected and without essential advocacy for their interests. They are still our fellow human beings and deserve basic respect, including advocacy.
Ethically speaking, being a blood relative is not necessary for surrogacy, basically the protection and advocacy for the interests of incompetent patients. Beauchamp and Childress present four criteria that should be met by any surrogate decision maker for that decision maker to be morally justified. Crucial for the current case, not one of these four criteria is that the surrogate is a family member. The four requirements are: • ability to make reasoned judgments (competence), • adequate knowledge and information, • emotional stability, and • a commitment to the incompetent patient’s interests, free of conflicts of interest and free of controlling influence by those who might not act in the patient’s best interests.
13
These criteria, not the criterion of being a blood relative, will protect incompetent patients from harmful decisions. It is pretty easy to imagine situations in which, although there is a blood relative available to act as a surrogate, that blood relative fails to meet one or more of these criteria that any surrogate decision-maker should demonstrate.
In this case, the in-law surrogate qualifies as a morally justified surrogate. Her current chosen plan of non-aggressive palliative care, given the prognosis and what this surrogate knows about this patient, has her satisfying all four criteria. MP has taken JP to medical appointments, driven him to the grocery store, sat with him during chemotherapy and radiation treatments, and, for the last three months, checked on him multiple times a day. Arguably, MP is the best person to make this surrogate decision for JP. Most importantly, in this situation, MP felt that JP would not want to continue aggressive treatment. It is crucial to recognize and use this fact to make the current medical decision and demonstrate respect for the autonomy of this now incompetent patient.
In the context of the principle of nonmaleficence, Beauchamp and Childress also relevantly explain that “the use of life-sustaining treatments sometimes violates patients’ interests. For example, pain can be so severe and physical restraints so burdensome that these factors outweigh anticipated benefits, such as brief prolongation of life. 14 ” Health care workers are not obligated to provide either treatments that cause more harm than benefit for patients or futile treatments. It seems this law would mandate the provision of futile care and continuing to offer treatments that are more harmful than beneficial to the patient simply because there is no blood relative available to refuse or withdraw futile or detrimental treatment. Again, this blood-relative law will predictably lead to the use of life-sustaining treatments that will violate the principle of nonmaleficence.
One more point about the current state law. It seems to assume that quantity or length of life, mere longevity, and continued existence are always in a patient’s best interests. This is not true of those who have clearly stated in an advance directive that they would not want to be given a mere quantity of life without adequate quality. Continued existence in pain and suffering and without consciousness seems rather pointless, except that it points to a denial of death among those who prolong life without consideration for the quality of that life. Before beginning or continuing life-sustaining treatments, the treatments should be determined to benefit the patient. What will benefit a patient is not merely existing longer in time, but also must be treatments that will help, qualitatively, a patient. And quality of life judgments cannot be avoided and should not be avoided. As Beauchamp and Childress explain, “It is impossible to determine what will benefit a patient without presupposing some quality of life standard and some conception of the life the patient will live after a medical intervention.” And “a judgment about whether to use life-prolonging measures rest unavoidably on the anticipated quality of life of the patient. . . ” 15
As an ethicist involved in this case, I argue for what is in the best interests of this patient, as advocated for by an ethically qualified surrogate decision-maker. Using the current state law to disallow MP as a surrogate to discontinue the treatment of JP commits a moral wrong. Morally speaking, we should abide by the decision by JP through this surrogate decision-maker and withdraw life-sustaining treatment. The fact that this decision is illegal in our state does not lead me to conclude we should, therefore, ignore this surrogate and refuse to withdraw treatment as it would not provide the maximum possible length and quantity of life. Continuing to treat this patient to comply with the state law would be too narrowly interpreting this case as a mere matter of justice. But this justice or legal interpretation disregards minimizes and violates the principles of nonmaleficence, beneficence, respect for autonomy, and the rule of fidelity to our patient. From an ethical perspective, I would stand behind this surrogate and urge that we follow a palliative comfort care plan. The challenge will be to find a legal way to provide morally justified health care, navigating this problematic state law. I urge legal and risk management to figure out a way (e.g., somehow manage to get a court-appointed guardian). This appointment is being made to serve the interests of this patient and perhaps many more future patients in this state with this law. In the long term, morally speaking, this law should be reevaluated if not repealed, given the severe harm to the interests of patients that will undoubtedly occur due to following it.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
