Case Study: Clinical Scenario
The case study presented herein is a real case with fictional names used for the patient, family, and physicians to protect anonymity and comply with the Health Insurance Portability and Accountability Act (HIPAA).3
Mr. J is 86 years old. He has a medical history of advanced Alzheimer’s dementia and chronic obstructive pulmonary disease (COPD) from about 60 years of smoking over his lifetime. He also has hypertension, diabetes mellitus (Type-2), and congestive heart failure (CHF) with 40 percent heart ejection function after two heart attacks within the last 10 years. He was admitted to the hospital in early May 2021 after having his third episode of pneumonia since September 2020.
He has been completely bed-ridden since early 2018 as a consequence of advanced Alzheimer’s dementia and his other clinical comorbidities. Due to Mr. J’s dementia, he is unable to talk or understand anything said to him, and usually stares purposelessly at the ceiling or at the machines connected to various tubes inserted in his body. He has not been able to swallow well since early 2019 and a feeding gastric tube (G-tube) was surgically inserted in his stomach in mid-2019. A urinary Foley catheter was inserted through his urethra into his bladder to drain the urine because he cannot walk and frequently soiled himself with urine. During Mr. J’s most recent admission to the hospital for pneumonia, after being unable to come off the ventilator, he had a tracheostomy tube placed in his trachea for long-term respiratory support. This tube is permanently connected to the ventilator since otherwise he is unable to breathe on his own. He has also developed a large bedsore on his lower back, which has gotten progressively worse and reaches three inches deep through the muscle and ligaments into his tailbone, and has a bad infectious odor due to the persistent deep skin and bone infection.
He often moans and groans due to pain from the surgically placed tubes in his belly, neck, and penis and from the bedsore on his lower back. He is frequently given intravenous (IV) morphine to control the pain. He began picking at his IV lines and tubes and inadvertently pulled some of them out, including most recently his feeding tube, which led to blood loss and emergency surgery to replace the tube. His arms and legs have been tied to the sides of the bed to prevent him from pulling out the tubes again. He does not recognize his wife of 60 years or his three children (David, Jane, and Michael). His children are in their mid to late fifties and have their own families. They all live within 20 miles of Mr. J and try to help their mother with Mr. J’s care, but due to Mr. J’s clinical decline and increasing need for medical and personal care, they had to permanently admit him to a nursing home.
With his advanced disease progression, the nursing home caring for Mr. J is no longer able to provide him the level of care he needs, resulting in his admission to the high dependency unit (HDU) in the hospital. Due to the COVID-19-related resource shortage, the hospital where Mr. J was admitted had a bed shortage in the HDU, presenting a new challenge to Mr. J’s ability to receive the ongoing care he needs. At the time of this admission (May 2021), Mr. J is on a total of 18 different medications throughout the day. The medications range from IV antibiotics to multiple pain medications, and medications for his heart, blood pressure, and diabetes. Since he is unable to swallow any pills, all of these medications are crushed and administered to him through his G-tube. He is also not able to control his saliva and needs frequent oral suctioning to make sure that he does not choke on his oral secretion. This oral secretion choking has led to the recent frequent episodes of pneumonia.
The family has been told about the current clinical state of his disease progression and related comorbidities and likely prognosis of a few months in the hospital, and was presented with the option of taking him home with hospice care where he will likely die in a few weeks. The family has been distraught and is angry at the hospital and the doctors for not “fixing” his medical issues, now “dumping” him home with minimal services, and “letting him die without any care.” They feel that the hospital and insurance companies are in cahoots, and are trying to save money and reduce their costs by sending him home to die.
On the other hand, his doctors (primary care, surgeon, cardiologist, pulmonologist, and gastroenterologist) have had multiple meetings about his care needs and have concluded that there is nothing more they can offer him medically. They feel that they are not adding any value to his overall status, and even with the most comprehensive medical and surgical interventions, they cannot improve his prognosis. In fact, they believe that they are torturing him and causing him more pain and suffering at this terminal stage of his life. Dr. George, the medical director of the HDU, feels that in addition to the above, it is important to consider that there is a bed shortage in the hospital and that they are putting their resources in a patient who will not survive even with the best possible hospital care. He hopes that the family can understand Mr. J’s prognosis and will put him in hospice care where he can die comfortably.
The family was offended when they heard about the bed shortage and the hospital “kicking Mr. J out of the hospital to die” because it “wanted to give his bed to another patient.” The family has called the hospital’s chief executive officer (CEO) and is threatening to report the hospital to the state as well as sue the doctors and the hospital for malpractice if the hospital proceeds with the plan for terminal discharge with hospice care. Dr. George has recently called a Palliative Care and Ethics consult to help with the above conundrum. The hospital’s risk management lawyer has also been informed about this scenario.
The Nature of Palliative Care
Palliative care is a medical specialty that focuses on providing patients relief from pain and other symptoms of a serious terminal illness.4 Palliative care teams are skilled in specific communication and mediation skills to help resolve complex care issues and decipher long-term placement and goals of care for terminal patients. Their expertise further focuses on supporting and navigating families through these difficult times.5 Palliative care has been shown to both prolong and improve quality of life outcomes for terminal patients.6 In addition, palliative care helps reduce caregiver and family stress with the dying of their loved one.7 Over the last two decades, palliative care has been increasingly used for patients with advanced cancers, heart failures, and advanced states of dementia.8 About 30 to 35 percent of these patients get palliative services as part of their end-of-life care.9
As related to advanced Alzheimer’s disease, statistics reveal that an estimated 6.2 million Americans aged 65 and older are living with this condition. This number is projected to nearly double to 13 million people by 2050.10 Alzheimer’s disease is currently the sixth-leading cause of death among adults in the United States.11 In 2010, the costs of treating Alzheimer’s disease were projected to fall between $159 and $215 billion. By 2040, these costs are projected to jump to around $500 billion annually.12 The average life expectancy of an Alzheimer’s patient from diagnosis to death is around three years.13 Unlike other terminal diseases, Alzheimer’s disease is known to cause significantly greater physical and emotional distress to the patient’s family. Although the patient may be unaware of his or her own clinical condition, the patient’s caregivers and family see the patient suffer through multiple other reversible and potentially treatable ailments while continuing to gradually decline mentally. This leads to significantly higher stress for the family.14 Even though the patient’s expected decline is emphasized to the patient’s family by the doctors in the earlier phases of the illness, often this does not occur frequently enough or with enough emphasis to fully convey the limited options left at this stage, and if it is conveyed with emphasis and frequency needed, it is often misunderstood by the family.15 This is exactly what happened in Mr. J’s case, leading to the conflict that is the subject of this article.
Training Palliative Care Physicians as Facilitators for Goals of Care Family Meetings
Like mediators in court-administered mediation programs in some jurisdictions,16 palliative care physicians require specific skill training before facilitating palliative care family meetings. In the United States, they must go through a one-year advanced fellowship after their primary medical or surgical residency to learn the skills needed to be an effective facilitator in a palliative care goals of care family meeting.17 Afterward, they need to pass a board certification exam to be an official specialist in palliative care.18
The following skills are required to be an effective clinical expert in a palliative care goals of care family meeting:19
1- Have a good baseline medical knowledge.
2- Understand the clinical condition and overall associated prognosis.
3- Understand the social situation.
4- Consider the psychological, cultural, and spiritual values of the patient and family.
5- Know the healthcare system and be able to assist in navigating the complications from a treatment and insurance standpoint.
6- Be able to show empathy to the patient and family and have an excellent bedside manner.
7- Be able to use all of the skills from 1 through 6 and put them together to come up with a reasonable plan that is acceptable to all parties, while keeping the patient as the most important component in the decision-making process.
Communication Skills of Palliative Care Physicians
Until the early 2000s, most palliative care goals of care family meetings had traditionally followed a paternalistic model of communication. It primarily included the clinician asserting a medical decision regarding a patient’s outcomes and treatment to the patient and the patient’s family. It often did not include a joint decision-making process. This was primarily based on the difference in clinical knowledge between physicians/clinicians and patients/families. Medical experts and ethicists signaled their concern about patient and family representation in this model since this kind of single-sided decision-making process often ignored patient and family opinions and values. This paternalistic model also led to more conflicts between the parties.20
Since that time, palliative care physicians have been taught about the five-step VALUE approach,21 which stands for the following:
V = Value comments made by the family
A = Acknowledge family emotions
L = Listen
U = Understand the patient as a person
E = Elicit family questions
This approach has shown better outcomes with more family satisfaction with the end-of-life communication process and lesser long-term anxiety and depression issues due to the stress among the family and caregivers.22
Another commonly used approach by a practicing clinician for breaking bad news or involving families in palliative care settings is the six-step SPIKES model,23 which stands for the following:
S = Setting
· Arrange for privacy.
· Sit down.
· Make a connection and establish rapport with the patient/family.
P = Perception of condition/seriousness
· Determine what the patient/family knows about the medical condition or what the patient/family suspects.
· Listen to the patient’s/family’s level of comprehension. Accept denial but do not confront at this stage.
I = Invitation from the patient/family to receive information
· Ask the patient/family if they wish to know the details of the medical condition and/or treatment.
K = Knowledge of the medical facts in the case
· Use language intelligible to the patient/family.
· Consider the patient’s/family’s educational level, sociocultural background, and current emotional state.
· Give information in small chunks and check whether the patient/family understood what was said.
· Respond to the patient’s/family’s reactions as they occur.
E = Explore emotions and sympathize
· Prepare to give an empathetic response by doing the following:
(A) Identify emotion expressed by the patient/family (sadness, silence, shock, etc.).
(B) Identify the cause/source of emotion.
(C) Give the patient/family time to express the patient’s/family’s feelings and then respond in a way that demonstrates recognition of the connection between (A) and (B).
S = Strategy and summary
· Close the interview.
· Ask whether the patient/family wants to clarify anything else.
· Offer an agenda for the next meeting (e.g., “I will speak to you again for XYZ, and we will plan for …”).
Since its publication in the early 2000s, the SPIKES Model is specifically taught in palliative care, oncology, and cardiology settings as a favored model of communication regarding morbidity and mortality in end-of-life situations in combination with the VALUE model.24
Expert Palliative Care Physician/Facilitator in the Case Study
Mr. J’s clinical team selected Dr. Bean to help the family emotionally and mentally come to terms with Mr. J’s health status and serve as a clinical facilitator in this case. He was a palliative care physician who had previously seen the patient for pain management and had reviewed his chart in detail. He had a good rapport with the patient’s wife and children. He had also worked with Dr. George, Mr. J’s primary care physician, Dr. Lang, and others on the clinical teams involved in Mr. J’s care. Most importantly, Dr. Bean had worked on similar cases and understood the emotional nature of these scenarios. As a palliative care physician and a medical ethics expert, Dr. Bean knew well about the patient’s overall prognosis, the stress on the patient’s family, the associated aspects of clinical futility, and the economics and other realities of the patient’s clinical care.
Components of Palliative Care Goals of Care Family Meetings
Preparation for Palliative Care Goals of Care Meetings
Per the protocol for a palliative care goals of care meeting, Dr. Bean made sure that he reviewed the clinical chart for this hospitalization and prior hospitalizations in detail. He also reviewed the notes from various clinical services, lab results, radiological imaging, and other clinical investigations. He contacted the nursing home to obtain Mr. J’s clinical records and talked to Mr. J’s nurse at the nursing home to understand Mr. J’s clinical needs and physical functional status while a resident there. Dr. Bean went to Mr. J’s room in the HDU and examined him. He talked to the clinical staff and scheduled a meeting for the next morning with the patient’s wife (who was the patient’s healthcare proxy) and children. He also requested that Dr. Lang and Dr. George be present for the meeting since they were the key decision makers from the hospital side.
Introductory Session and First Joint Meeting
The first palliative care goals of care family meeting was scheduled in the HDU meeting room at nine in the morning. Dr. Bean sat at the head of the large rectangular table. Mr. J’s wife and children sat on Dr. Bean’s left side, while Dr. George and Dr. Lang were on his right. Dr. Bean could feel the tension on both sides. He had turned off his cellphone and had told the other doctors earlier to do so as well. He had one of the nurses put a Do-Not-Enter sign outside the room. He started by introducing himself and explained his role as a clinician mediator for this meeting. Dr. Lang and Dr. George also introduced themselves. Dr. Bean asked the patient’s wife and children to introduce themselves. Then he moved ahead, stating that it was a very difficult situation for everyone involved, especially the family, and he was very sorry that Mr. J’s condition had worsened. He thanked the family for being excellent advocates for Mr. J. He then explained how he will proceed with the meeting — that they would initially sit together and individually tell him about their understanding and issues with the current situation, and then later he would talk separately with each side. He emphasized how important it is for this process that everyone be respectful to each other and let each person complete his or her statement without interruption. He assured them that everyone would get a chance to be heard. Then he asked Mrs. J to tell them what she knew about the clinical status of Mr. J. She appeared emotional, stated that she was very overwhelmed, and asked her older son David to describe their understanding of Mr. J’s clinical decline and their current issues with his medical team.
David was also emotional as he stated that his dad was a very strong man, describing his dad’s will to survive and to see his great grandkids. He told Dr. Bean that his father was a Vietnam war veteran who ran a successful local flower shop in their hometown. He talked about how all of the infections that his father had could be fixed with antibiotics and that he believed that gradually his father could come off the ventilator and start eating by himself. Then he discussed his disappointment with the hospital staff, particularly with the staff telling his family that “they would pull the plug on him” and that he was going to “die without air.” He said that his dad is a fighter and he and his family would not give up on him. At this point, the younger son Michael took over, stating that the hospital was trying to kill their dad and that they would seek legal action against the hospital and the doctors if they did such a thing. The daughter also chimed in, stating that they are in the process of reporting the hospital to the state for these practices. All this time Mrs. J was quietly sobbing.
After the family finished speaking, Dr. Bean turned to the two doctors on his right side and asked them to talk more about Mr. J’s clinical status. Dr. Lang spoke first, describing Mr. J’s progressively worsening dementia and dependency on multiple tubes and devices to provide the basic functions needed to stay alive. He stated that with the known trajectory of the illness and all of the complications, it was likely that Mr. J had weeks to months to live even with all of these extreme medical interventions. Dr. George took over, reiterated the points Dr. Lang made, stated that they were very sorry that Mr. J had gotten to this terminal status, and agreed that there is not much that could be done further — that even with all of these interventions, Mr. J had weeks to months to live. At this point, the patient’s daughter broke down and started crying. Dr. Bean brought her tissues and water from the back of the room. Michael became angry and yelled “you have killed him!” and walked out of the room. Dr. Bean remained calm and stated that he is very sorry about this situation and apologized for delivering the bad news.
First Private Meeting with the Family
About 30 minutes later, the patient’s family reassembled in the meeting room. The daughter, Jane, was still crying, and Michael was still angry. Dr. Bean used the strategy of naming the emotion, stating that he could see that the family was very upset. At this point, Michael said that the “hospital just wants to make money …, it thinks of their father as just another patient, and doesn’t care about his clinical improvement.” He talked for the next 15 minutes about various things that went wrong during his hospitalizations. He described how they had been told by the doctors that the feeding tube will help their father to get more nutrition and get stronger, but that all it did was add more pain and infections for their father, resulting in three subsequent hospital admissions. He talked about how his dad was a motivated person and was full of life. He said that his dad hated being sick, never wanted his family to worry about his health, and never wanted to be a burden on them. Michael then broke down and became tearful. Jane then spoke about how strong her dad was, how he cared for everyone in the family, and never wanted to bother anyone with his own health issues. Dr. Bean sensed the strong emotions and let them talk. Once they finished speaking, Dr. Bean thanked them and explained that they are all just looking out for the patient’s best interest. Then he used the technique of empowering the family. He told them that the family should make their decisions regarding Mr. J’s care based on their best understanding of the patient’s own expressed or implied wishes. He then asked Mr. J’s wife if she wanted to talk about anything. She again referred to her kids, but added that Mr. J was a very independent man and never wanted to be in pain or get life support if he was in a vegetative state with no chance of recovery. At this point, Dr. Bean pointed out that there were at least three interventions that can be considered life support for Mr. J, including the antibiotics for infection, G-tube for feeding, and tracheal tube for breathing. He explained that Mr. J was also getting daily blood draws and had a catheter placed for urine, which can be very painful. He emphasized that, most importantly, Mr. J had to be restrained to his bed to prevent him from inadvertently pulling out these lines during his episodes of agitation. He asked Mr. J’s family to think about these interventions as life support and view them in light of the patient’s expressed wishes.
Mr. J’s wife said that she needed a few minutes with her kids. Dr. Bean stepped out of the room. About five minutes later, they called him back into the room. He could see that the family had been crying. David said that they had decided that because of the importance of not being in pain and maintaining Mr. J’s independence, they could not continue to allow him to be in a state where he is tied up to maintain an IV line, getting daily blood draws, and being fed from the G-tube. He said that the family was okay with stopping the blood draws and IV antibiotics, knowing that his infection and nutrition status may get worse, but that they could not bear the sight of him being tied down to his bed for these interventions that he would not have wanted. They stated that they could not approve taking away his oxygen or taking him off the ventilator since that would cause immediate death. They also agreed to a do not resuscitate (DNR) order for Mr. J. Mr. J’s wife (his healthcare proxy) authorized the DNR order, and Dr. Bean noted these discussions and decisions in his notes. He told the family that they had made a big decision and that it was the right decision because they made it in consideration of the patient’s wishes. He thanked the family for looking after the patient’s best interest. He then had the family go back to the patient’s room.
First Individual/Private Meeting with the Doctors
The family left the meeting room and Dr. Bean paged Dr. Lang and Dr. George to return to the room. Dr. Lang started the discussions. Dr. Lang said that his care team had done everything to make sure that the patient received all possible interventions to facilitate his return to the nursing home, if not his own home, but because of the patient’s continuous and repeated complications, he was concerned that Mr. J may end up in the intensive care unit (ICU) again soon.
Dr. Bean told the doctors that the family had started to understand the gravity of Mr. J’s illness, realizing that Mr. J’s disease progression is likely irreversible at this stage and that he may never reach his prior functional level. He reiterated the family’s description of the patient as an independent person and of their recounting of Mr. J’s conversations with his family about not wanting to be in pain, lose his independence, or be put on life support if he was in a permanently vegetative state. Dr. Bean told the other doctors that, based on these factors, he determined that the family’s interest in ensuring the patient’s wishes for managing his pain and not limiting his independence was paramount. Dr. Bean said that when he rephrased the pain and suffering from all of these interventions and tubes in the context of the patient’s wishes, the family had agreed that they would like to get the G-tube, urinary catheter, and IV lines removed so that the patient’s bed restraints could be removed. The family also agreed to not getting more blood draws since it was a painful procedure, but they were not willing to remove the ventilator or oxygen at this point, which means that the patient would need to stay in the hospital to remain on the ventilator. Dr. George said that he was glad that the family was gradually coming to terms with this scenario. He said that the care team had noticed that the patient was less dependent on oxygen and they can try to see if he can breathe on high dose oxygen by mask instead of a permanent tube, which may help him get out of the HDU and move to a regular floor bed where his needs could still be accommodated. That way, he could stay in the hospital while opening up the HDU bed for another sicker patient.
Second Private Meeting with the Family
After the other doctors left, Dr. Bean called in the family again. He told them about the doctor’s suggestion that they may be able to remove the ventilator and give the patient high flow oxygen, which is less restrictive, and may enable the patient to move to a regular floor bed so that they can open up the HDU bed for the hospital. He also added that this may allow for the patient to have more independence since he will not be attached to a breathing tube and would instead have only a mask on his face to assist the patient in breathing on his own. The family was agreeable to this approach but stated that if Mr. J’s oxygen levels drop any further, they want it to be actively managed with medications and do not want him to be left to suffocate to death. Dr. Bean agreed to pass on this request to the other doctors.
Second Private Meeting with the Doctors
The family left the room and Dr. Bean paged the doctors to return for the second individual meeting. He spoke with them about the family’s agreement to using oxygen by mask only for now, conveying that the family did not want the patient to suffocate and wanted a high level of medical management at the hospital floor bed for him. The doctors said that they can provide a high level of care for the patient on the regular medical floor and will ensure that the patient is comfortable. They also noted that they could keep Mr. J in that room for a longer period, if necessary, since the COVID-19-related bed crunch related only to ICU and HDU beds and they still have ample regular floor beds available where the patient’s needs can be accommodated. Dr. Bean then suggested that since the family trusts him, he could take over managing the patient’s care in this new setting so that the family feels more comfortable. The other doctors agreed. Finally, he talked to the doctors about clarifying their prior decision making to the family. He told them to reiterate their care and concern for the patient as the underlying reason for their earlier paternalistic approach in the upcoming joint meeting with the family.
Final Joint Meeting and Resolution of Conflict
Dr. Bean called the family back in the room with the other doctors. He told everyone that he was glad that a reasonable resolution could be reached. He thanked both sides for their time and patience. He noted how difficult it is for the family to cope with the patient’s gradual but steady clinical decline. The doctors apologized for the lapse in communication and explained that their intention was never to discharge the patient without active management and a clinical care plan. They emphasized that they too want to make sure that Mr. J gets the best possible care at this advanced stage of his disease.
Michael said that he did not mean to threaten the clinical team and that he understood that their intentions were to provide the best medical care for his father and to support his family in the best way possible in this difficult situation. David chimed in, expressing their satisfaction with the new plan to try mask-administered high-dose oxygen in a regular hospital bed. He also said that they were happy that their father would not be hooked up to multiple machines and tubes any longer because this is not what Mr. J would have wanted. Mrs. J. thanked the doctors, expressing happiness that they reached a reasonable resolution. She also said that Mr. J would have wanted to be home if his condition was terminal, so if his clinical condition allowed then they would like him to be home with their family in the foreseeable future. Everyone thanked Dr. Bean for his empathy, support, and navigation through this difficult process.
Comparing and Contrasting Mediation and Palliative Care Processes
The palliative care goals of care family meeting is similar to court-related mediations in both family and civil matters. Mediation is a conflict resolution process that leaves decision making primarily in the hands of the people in conflict.25 This section highlights some key areas of commonality between the palliative care goals of care meeting process and mediation.
Underlying Purpose and Goals
Both scenarios concern conflicts that involve strong emotions and value disputes. These conflicts can lead to bitter battles that culminate in prolonged and costly litigation.26 The types of joint problem-solving employed in mediation and palliative care goals of care family meetings help find a mutually acceptable resolution where both parties’ interests are represented. This is particularly beneficial in cases involving important relationships where there is a preference to maintain a working relationship in the future, as in this case study and various mediation case types, including family and estate matters.
Methods and Related Process Considerations27
Practical similarities between the two processes include the following:
1. Importance and selection of a trained facilitator/mediator.
2. Critical pre-meeting preparation, including telephone conference and information review.
3. Importance of choosing an appropriate meeting venue.
4. Parallel format of using joint sessions and individual meetings to facilitate collaborative problem solving and mutually acceptable outcomes that reasonably represent the interests of all parties (in palliative care goals of care family meetings, the primary focus is usually the best outcome for the patient).
5. Voluntary nature of these meetings (in most cases).
Other process similarities that are not as readily apparent include the non-binding nature of a palliative care family meeting and the fact that parties are not compelled to reach an agreement. Although in traditional mediations participation can be either mandated or voluntary, only the resolutions are binding on involved parties. Mediation participants are not obligated to reach a settlement, only to participate in good faith.28
Like a mediation process, key decision makers must be present at the table (or their active availability procured via telecommunication in physical absence) to help with eventual decision making. Similar to mediations, in palliative care goals of care family meetings there is usually anger, frustration, or other strong emotions on both sides that need to be expressed while maintaining a respectful environment that is conducive to reaching a resolution. As in mediation, where there is a professional mediator, the clinician in palliative care goals of care family meetings is trained to deal with strong emotions and to show empathy or sympathy towards both of the parties that are dealing with a challenging situation.29 The clinician in these meetings uses mediation techniques, like naming the emotion and rephrasing the parties’ statements, as seen in the case study presented herein. The clinician facilitator also uses various techniques and statements to empower the parties to speak candidly.30 Empowering the parties to express themselves in a constructive way helps patients or their caregivers/family make care decisions that are critical to maintaining autonomy and quality of life during the progression of disease. This is especially important when it involves decisions on behalf of the patient, who unfortunately cannot make his or her own decisions due to the patient’s illness or other clinical circumstances.31
Agreements and Other Medical Documentation
The ways these two processes are documented are also similar. Both processes generate documents but less documentation than in litigation or arbitration (which are more formal legal proceedings), though some complex mediation cases may involve lengthy paperwork. Similarly, in palliative care goals of care family meetings, certain medical or other records may be created to cover the legal aspects of the decision-making process. These may include state-mandated medical (or physician) orders for life-sustaining treatment (MOLST/ POLST) forms and healthcare power of attorney assignment (HCPOA) forms, among others.32 These documents are simple and self-explanatory in their use. They take a few minutes to complete along with the patient or the patient’s family. In most cases, these completed forms do not need to be submitted to a court or state agency (but some states may require submission of these forms to a designated entity or database); the clinician may keep a copy for hospital records and give the originals to the family to use in urgent/emergency situations.33
The most critical dissimilarity between the two processes is that of confidentiality. Confidentiality is a pillar principle of mediation. Absent some select exceptions (child abuse, impending criminal act, etc.), the communications of mediation participants are strongly protected in the mediation process. As an initial step in most mediations, the mediator assures both parties of the utmost confidentiality from the opposing side(s), unless allowed by the party holding that information.34 On the other hand, with the involvement of multiple care teams needing information for patient care and billing purposes,35 the information presented in a goals of care family meeting may be revealed to the patient’s care team when it would be helpful for the patient’s ongoing treatment.
Another big difference in the palliative care goals of care meeting is the presence of a clinician facilitator who is employed by the hospital, has worked as a clinician for the same patient, and has a professional relationship with the other doctors on the patient’s care team. This is in contrast to the mediation process, where the mediator has no prior relationship with the parties in order to maintain a sense of neutrality and to prevent any bias towards either party.36
From a procedural standpoint, the most obvious difference is that most palliative care goals of care family meetings in end-of-life settings are directive (more advisory in nature, with the focus of bringing parties to the negotiation table) in their approach, with some interspersed elements of facilitative mediation (question-based facilitation of the parties’ understanding of the issues that facilitates reaching a resolution). In contrast, mediations are often more facilitative in their approach than directive, although this can vary from case to case given the spectrum of available styles.37
Educational and Training Background
From an educational and training standpoint, the variance between the two processes lies in the medical background required for a palliative care clinician facilitator. While mediators in traditional mediation settings often have a legal background (such as lawyers and retired judges) along with their substantive expertise, a legal background is not necessarily required, although some states may require specific training/certifications/background. For example, Alabama requires mediators to be lawyers for at least four years, or have a bachelor’s degree along with five years of managerial experience and 20 hours of mediation training. Indiana requires that a civil mediator be an attorney, have 40 hours of Commission-approved civil mediation training, and have taken at least six hours of approved continuing education training within three years of submitting the registration application.38 Many family mediators have counseling and social work professional expertise, but it is not necessarily required (again, depending on state or local court rules).
Although there are similarities as to documentation noted above, there are also some major differences in the documentation of the agreement. In mediation, at the end of the process, the agreement is captured in writing and the parties sign the document (although it can vary in some cases, especially if the mediation is not ordered by a court).39 If the mediation is online, then signing can be done with software. It is a best practice to have all parties sign the agreement and is required by law in some jurisdictions. But in end-of-life cases, there is no mandatory formal agreement that must be documented in writing. The discussions from the meetings are documented in detail and may be included in the patient’s chart and the palliative care clinician facilitator may complete some state-mandated paperwork, including Do not resuscitate/Do not intubate (DNR/DNI) documents, which would require a patient’s or designated family healthcare proxy’s signature, but these are not mandatory outcomes/documents.40
Finally, there are some big differences between these two processes from a billing standpoint. Usually, palliative care goals of care meetings will correspond to particular Centers for Medicare & Medicaid Services billing codes (as allowed by individual commercial or federal/state insurance plans) and the costs of the meeting would be paid by the insurance company that is covering the ongoing clinical care for the patient on a per service or time spent basis.41 But in the mediation process, there is usually a payment agreement (and sometimes court-mandated payment provisions) and parties usually pay the mediator per the agreement/court order.42 However, most jurisdictions have fee waivers available for indigent parties who cannot afford to pay for their portion of a mediation, and some jurisdictions offer free mediation services in landlord/tenant and small claims disputes as well as municipal matters.43 Some jurisdictions also require mediators to volunteer a portion of time or reduce their fees in situations where the referral to mediation was mandated by the court.44
Importance of Mediation Aligned in Medical and Legal Settings
As demonstrated by the case study, mediation plays a critical role in end-of-life care. The importance of mediation/palliative care facilitation in medicine is aligned with the importance of mediation in the legal field because they largely serve the same critical functions for lay individuals. Understanding the similarities and differences between these two systems can help to better understand the commonalities between the medical and legal fields and find room for improvement within both systems.
One main reason why this comparison is important is because both the medical and legal fields have become very complex for the layperson. This complexity adds more time, cost, and frustration to the layperson’s experience with the medical or legal system. Mediation and palliative care services are trying to accomplish the same function in these complex scenarios; they are both trying to simplify their respective legal and medical fields for the layperson. They take out multiple players, rules, and regulations, and most importantly, they reduce the cost of navigating these complex systems in particularly difficult situations. The point here is not that simplifying this complexity will achieve better solutions, but rather that it will increase understanding for, and ease of use of, these complex systems by allowing the lay individual to openly talk about the important issues at hand to find more expedient solutions to complicated and often emotionally draining issues at a significantly lower cost than without these tools.
Another key reason why this comparison is significant is that both of these processes bring the individuals most affected by the situation at issue into the decision-making process. Historically, both the medical and legal fields have been relatively paternalistic institutions, with doctors/hospitals and lawyers/judges serving as agents for the layperson, but ultimately running the show. Individuals are included only as needed/determined by their medical and legal experts. In stark contrast, mediation and palliative care goals of care meetings bring the individuals whose fate will be decided by these issues/systems back into the conversation and let them have open access to the outcome of their situation, including often by making decisions in real time. This returns some control to the individuals most affected by the outcomes and helps to allow these individuals to have more buy-in on the ultimate decisions that are made, to enable them to maintain a greater sense of autonomy, and to reduce the feelings of helplessness and fear experienced by many who find themselves in difficult medical and legal scenarios. By understanding the similarities and differences between palliative care facilitation/mediation in a medical setting and mediation in a legal setting, it can help bridge the perceived gap between the legal and medical fields and provide insight that can facilitate improvements to both systems.
What Can Palliative Care Facilitation and Mediation Learn from Each Other
There has been significant growth in the use of palliative care in hospitals across the United States in recent years. As of 2019, 72 percent of hospitals with 50 or more beds report having a palliative care team, an increase from 67 percent in 2015 and seven percent in 2001. In addition, these hospitals serve about 87 percent of all hospitalized patients in the United States, an increase from 82 percent in 2015.45 This is a substantial benefit to patients and their families with complicated end-of-life care situations.
However, there are aspects of palliative care facilitation that could be improved by taking a page out of the mediation playbook. First, palliative care facilitation would benefit from working independently outside of the large hospitals and healthcare systems, or from using neutral third-party facilitators to serve as mediators rather than using facilitators who represent the hospital/healthcare providers and may be a part of the patient’s existing care team. This will help reduce some of the power imbalances that may still exist in these situations, despite the improvements that have been seen in this area through active efforts to use techniques that reduce paternalism in palliative care meetings.
Second, palliative care would benefit from having independent billing structures the way that mediation does. Palliative care meetings are like clinical procedures, which can become intense and time consuming. Using a general billing model that is made to cover general medical consults with limited/capped billable time can do a disservice to palliative care meetings, since they can often require more time and effort and at times exceeds the allocated billing time. This can lead to time restraints on these palliative care meetings and prevent palliative care clinicians from conducting detailed and balanced time-independent meetings, which in turn can decrease the expected quality outcomes from these meetings.
Finally, palliative care facilitative meetings could have a greater impact on the healthcare system overall if they were mandated for certain situations. As discussed above, mediation is often mandated by courts, requiring parties to at least attempt to reach a mutually agreeable solution before moving forward with more costly and time-consuming litigation. It would be beneficial for reducing costs and stress related to end-of-life care if there were a similar mandatory process for palliative care consults for patients where certain clinical scenarios indicate there would be a benefit to the patient or the patient’s family in having palliative care meetings. Some recent data suggests that physicians feel that their patient’s current team has the skills to meet the palliative care needs for the patient’s clinical scenario without involving a palliative care facilitator or a formal palliative care meeting process.46 This leads to under-utilization of palliative care services and subsequent lower palliative care consultation rates. As discussed above, palliative care goals of care meetings with a palliative care facilitator can significantly improve patient and family satisfaction with their care, facilitate greater patient understanding while navigating a complex healthcare system, and decrease costs and provider time navigating difficult situations that may arise from miscommunications during this difficult time in a patient’s and family’s lives. By making palliative care meetings and end-of-life care discussions compulsory based on certain clinical criteria, it would facilitate starting difficult conversations before there is a conflict and potentially improve end-of-life care planning as well as decrease the cost of often futile end-of-life clinical care for patients with advanced diseases.
Similarly, mediation can learn from palliative care facilitation. Palliative care meetings involve a multidisciplinary team of providers that weigh in on issues in their subject matter expertise with respect to the patient’s prognosis and care decisions. Allowing the patient and family to be involved in discussions about the patient’s care with the patient’s multidisciplinary expert team improves the patient’s/family’s understanding of what they should expect and helps them process and prepare for a realistic prognosis and likely outcome. Including a diverse team of subject matter experts in the mediation process in more highly contested and complex matters would likewise increase the parties’ understanding of the pertinent issues and help create a common baseline understanding of the issues in dispute. Some may feel that adding experts to mediation may change this relatively simple process into another alternative dispute resolution (ADR) court system with expert witnesses and evidence requirements. This is an understandable concern; however, integrating individual advisory experts is already occurring in limited contexts within jurisdictions that permit nonparty participation in mediations under specified conditions. This approach can be expanded as is beneficial and economical. Ultimately, the importance of clarity and fairness in a legal matter and the benefits of reaching a mutually agreeable resolution early in the dispute outweigh the need for simplification in many cases.
Palliative care also benefits substantially from having a formal palliative care fellowship training program for palliative care facilitators. This formalized training requirement would benefit the field of mediation. All mediators, especially those associated with court-mandated programs, should have a minimum of 40 hours of training consisting of a structured curriculum that covers critical core theoretical, ethical, cultural (including implicit bias awareness), technical/process, legal, and particular skill areas. The training should be highly interactive and include extensive roleplay exercises and intercultural awareness. Most court programs across the country currently require 15 to 40 hours of training for eligibility to serve on various mediation rosters, with distinctions often made between civil, family, and municipal programs. Forty hours of a standard basic mediation training should be the minimum, coupled with an experiential component. Mediators practicing privately, outside of court or agency associated mediation programs, can hang up a shingle in most jurisdictions in the United States without any approvals or reporting requirements, unlike palliative care physicians. This issue is magnified by the explosive growth of online remote mediation.47
Compulsory interactive training should be followed by a certification review process. This review, including mentorship and observation, should involve a culturally competent, fair, and accessible process that promotes a diverse and rich pool of qualified mediators. Though there currently exists the potential for private, voluntary certification through national and local associations, this is not currently standardized nationally or even statewide. There should also be annual continuing legal education-like requirements for mediators to continue improving their mediation skills and staying up to date on important developments within the subject matter areas in which they specialize. Creating uniform training and certification processes would add a more standardized structure to mediation as a field so that a layperson can have a better sense of what skills and competencies to expect from a mediator and can more efficiently and confidently be able to use and understand the benefits of mediation services, both within and outside of traditional court-ordered mediation settings.
The above case study serves as one example of many cases regularly seen by palliative care clinician facilitators. Within a convoluted healthcare system, complicated by difficult medical terminologies, insurance and payment systems, multiple healthcare providers, and frequent lapses in communication, palliative care services have proved to be of prime importance in bringing together patients and their healthcare providers in complex end-of-life cases and preventing conflict escalation.48 Palliative care goals of care family meetings also help reduce the cost of clinical care in the United States healthcare system, particularly in clinical cases like this case study that involve prolonged hospitalizations that disproportionally increase the overall cost of clinical care.49
From a liability cost standpoint, medical malpractice litigation currently adds as much as $97.5 billion annually to the cost of hospital and physician/clinician services, which is about four percent of annual total United States healthcare costs.50 There is evidence that early palliative care discussions prevent potential legal issues between hospitals and patients or their families, which helps reduce the overall cost of healthcare.51 These palliative care teams are comprised of physicians, nurses, social workers, and chaplains. The idea behind using a multidisciplinary team is to provide multifaceted supportive care to the patient and the family that caters to their spiritual and social needs in addition to their clinical needs during a distressing time.52 This approach makes palliative care unique among the more esoteric (lab and diagnostic-based) fields of clinical medicine. Although a commonly employed option in legal settings, mediation is also used in healthcare settings. This is specifically true in end-of-life scenarios where there is an element of medical conflict and a concomitant desire to continue the clinical relationship. For these specific, yet relatively common scenarios, palliative care has adapted techniques from the mediation realm for use in healthcare settings to help with conflict resolution, decision making, and support for the involved parties.
Although there are multiple differences in the way palliative care facilitative services operate as compared to mediation, there are more similarities between the processes than differences. Like mediation, the goal of palliative care facilitation is to provide for conflict resolution that maintains a functional working relationship between the involved parties and decreases the interpersonal dissonance, lengthy delays, and exorbitant costs associated with more formal conflict resolution like litigation. Like in the mediation process, palliative care facilitation is flexible and accommodating and continues to change to accommodate the needs of clinical situations. Finally, like in mediation, with the increase in use that has occurred in the United States in the last few decades, there has been significant research on techniques, procedures, and outcomes of the communication skills used by clinician facilitators. This flexibility and growth in research have resulted in a gradual increase in the proliferation and success of palliative care services in healthcare settings across the country.
The benefits of palliative care facilitation are exemplified in the outcome of Mr. J’s case. Mr. J was given a trial of high flow oxygen through a face mask while in the hospital’s HDU. His antibiotics were stopped, IV lines, catheters, and feeding tube were removed, and he was given his favorite food to eat by mouth (for pleasure/comfort rather than strictly nutritional intake) per his ability to swallow. He was able to tolerate all of these changes. Eventually his bed restraints were removed and he was able to freely move his limbs. Because of this overall improvement, he was later sent to a regular hospital bed (outside the ICU/HDU) in a private room with a window overlooking a city park. Once COVID-19 restrictions were loosened, his family was allowed to visit him. A few days after they were able to resume visitations, he recognized his wife and son David and ate some of his favorite thickened apple sauce. This was a big symptomatic improvement from his prior clinical state. He was given low dose oral morphine drops to help with the sensation of breathlessness and his medication list was decreased to a total of four medications that were necessary for his comfort at this stage.
The next week, he passed away quietly in his sleep in the hospital with his immediate family by his side. A few days later, his family sent a link for his online funeral service to Dr. Bean, Dr. George, and Dr. Lang, who all attended it virtually. Dr. Lang, who was Mr. J’s primary care provider for more than 15 years, spoke at the service about caring for Mr. J and the excellent family involvement and advocacy during his final days in the hospital.
The successful resolution of this conflict is illustrative of the importance of palliative care goals of care family meetings for end-of-life care and its mediation-like approach in dispute resolution related to critical healthcare decisions. Beyond the savings with respect to time and money, this case speaks clearly to the intrinsic and powerful benefits of the role of palliative care service as a mediator in end-of-life clinical settings. As the healthcare system in the United States continues to get more complex for patients and their families to navigate, having a clinical service to help these patients and families through difficult decisions is paramount, especially in cases where disease and its outcomes are dire and complicated. This service can serve as an instrument that provides a bidirectional exchange of information while maintaining a human element during these tough and complicated scenarios.