Care Demands by Families and Family Healthcare Proxies: A Dilemma for Palliative Care and Hospice Care Staff

Healthcare providers might think that families whose loved ones are admitted to palliative or hospice care units for end-of-life care have a reasonable idea of what type of care will be provided; however, this is often not the case. Sometimes families or family healthcare proxies have false expectations or are misinformed, which can be particularly challenging to manage when this is superimposed on strong cultural, religious, and other confounding belief systems. These situations can also tax the healthcare staff, who need to balance meeting the needs of the dying patient with the needs and expectations of the family as much as possible, all while maintaining professional, ethical, and legal standards within the context of good and appropriate palliative and hospice care. The author presents two cases that exemplify the types of conflicts that may arise in palliative and hospice care settings when family healthcare proxies have unrealistic expectations and make inappropriate care demands of the healthcare staff. 

Key words: Hospice care, palliative care, end-of-life care, family conflicts, ethical and legal duties of staff, palliative sedation, client-centered care, patient-centered care.
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Happy families are all alike; every unhappy family is unhappy in its own way.

—Leo Tolstoy, Anna Karenina

One can use this famous quote from the Russian novel Anna Karenina to express how different families approach the process of the impending death of a loved one by their unique expectations and sometimes compelling and “aggressive” demands on the healthcare staff that their wishes for their loved one’s final days be achieved. The contrast in the demands from different families for what often seems to be similar clinical scenarios on the surface can be disquieting for frontline healthcare staff, especially when the demands are accompanied by threats—real or veiled—of legal regulatory action. In these circumstances, the healthcare provider’s ability to carry out his or her clinical responsibilities with a sense of pride, accomplishment, and dedication can be severely compromised. It may take considerable discourse and compromise with and between an array of family members, some of whom may act as healthcare proxies (ie, legal substitute decision-makers), to achieve a state of equilibrium and agreement whereby proper care can be provided in an atmosphere that is free of fear and threats.

This article provides two cases of unrealistic care demands that occurred in a palliative care unit in Ontario, Canada, where I serve as the administrative director. In Canada, palliative care units have the same primary care goals and characteristics of hospice units in the United States, although some of the funding and administrative issues may differ. Nevertheless, these two cases highlight the psychosocial needs and methods of communication that families may use to communicate with caregivers about their desires for or concern over their loved one’s care at the end of life. These cases illustrate how conflicts may arise when patients’ families, including their healthcare proxies, have unrealistic expectations and make inappropriate care demands of the healthcare staff, who then struggle to administer client- or patient-centered care.

Case 1

I received a call from the palliative care unit’s nursing manager, who said, “We have a family demanding palliative sedation for their father, who was admitted just before the weekend. He has metastatic lung cancer, and they feel that his suffering is too great and that the treatments he is getting are not enough. Although there is some disagreement between the family members, the son is adamant that we have to do this immediately.” Before meeting with the patient and his family, I called the two physicians involved in the clinical care of the patient: the attending physician and the weekend-covering physician, the latter of whom, according to the family’s account to the nursing manager, suggested that palliative sedation was a course of treatment that they could request for the patient.

The attending physician assured me that she was titrating the patient’s analgesic and psychotropic medications carefully and that much of the time he appeared comfortable with some occasional breakthrough episodes of agitation; these episodes were addressed as they occurred with dosage modification to acheive comfort. The physician covering for the weekend clarified to me that she did not suggest palliative sedation to the family as an option at this time. As part of the conversation with the son and daughter, however, the weekend physician had stated that palliative sedation could be considered after the unlikely event that all possible standard approaches to relieve his symptoms fail. The physician assured me that she did not express the opinion to the patient’s family that his symptoms were even close to that situation. In fact, she was certain that the usual treatment approach would provide adequate symptom management without the need to resort to palliative sedation.

With this information in hand, I reviewed the patient’s health records (including the transfer note from his previous acute hospital) with the nursing unit manager and the unit’s pharmacist. It was clear that, at the time of admission to our institution, he was uncomfortable with dyspnea and had pronounced agitation, potentially due to a combination of his breathing difficulties, anxiety, and an awareness that he was dying. The patient was sufficiently cognitively intact to express to the physician that he should be allowed to die, and there was no doubt that he had expressed this same sentiment to his family. His current wife, who was the official healthcare proxy, was his second marriage, and she was prepared to provide her husband with the necessary emotional support he required at this time and to allow the physicians to help him die peacefully. Unlike the patient’s children, but primarily his son, she was not focusing on the idea of palliative sedation.

The current treatment plan appeared to be adequate to gradually address the patient’s clinical needs within the usual clinical and professional standards of palliative care. The palliative care unit, with senior management approval, had developed a protocol for palliative sedation some years before. With the proper safeguards and consent in place, palliative sedation had been used very sparingly in the unit since the protocol was established (eg, in patients with complex pain management requirements and other symptoms that could not be adequately addressed with the usual approaches), with the goal of a nonwaking, comfortable death within a few days of initiation of the palliative sedation protocol.

During the family meeting, the nursing unit manager, the social worker, the patient’s son, one of his daughters, his wife, and I were in attendance; the patient was heavily sedated and could not participate in the discussion. The meeting was filled with a great deal of angst, concern, and impatience, particularly on the part of the patient’s son, who was a successful financial analyst and made clear that he was accustomed to getting things done his way. In contrast, the patient’s daughter expressed concern about her father’s discomfort, but she was not focusing on palliative sedation as the only means of securing her father’s comfort, and the patient’s wife accepted our assurances that we would endeavour to meet her husband’s symptom management needs.

Because the wife was the official healthcare proxy, from a legal standpoint, we could listen to the other family members but did not have to follow their direction. The social worker, however, reminded everyone in attendance of how important it was for everyone involved to understand the process of and rationale for the patient’s treatment plan. I explained the current law and regulatory framework that we were obligated to work in and what could happen if we undertook a different treatment plan (namely, palliative sedation) without the patient meeting certain criteria. I further explained that we could face a combination of significant opposition and discomfort from our experienced staff as well as sanctions or even legal risk for the unit’s physicians. Instituting palliative sedation before a patient meets the appropriate criteria (eg, intractable pain and other serious symptoms that cannot be relieved by any combination of the usual therapies) can be interpreted as euthanasia rather than palliative sedation.^1-4

During the interview, the patient’s son became almost hysterical in the way he described his father’s suffering. At times, he threatened to take some form of extreme action, including legal action, if we did not follow his wishes. His body language, verbal language, and threats, including the impractical suggestion that he would move his father to another unit, were addressed in as calm and determined a fashion as possible. We explained that our approach was similar to that of the other palliative care units in the city. He seemed to accept this at the time, but over the next few days, he had some additional outbursts in the unit whenever his father experienced even a modest episode of breakthrough discomfort. At one point, it became necessary for the security staff to calm him down and inform him that his verbal outbursts and threats to the staff would not be tolerated and that it was within our purview to ban him from the unit, which was not something we wanted to do. After this intervention, his excessive outbursts ceased.

I stayed in contact with the attending physician and nursing staff, and I visited the patient in the presence of his wife and some other family members throughout his stay at the unit. During one such visit 3 days before his death, the patient’s wife indicated that she felt that we were meeting our stated goals and that she believed her husband to be comfortable for the most part. She also told us that she was satisfied with the progress of his condition and was preparing herself for his death, which she knew would be imminent. During the remaining days, the patient’s condition stabilized in terms of symptom management, and he entered a state of varying degrees of somnolence. He died in apparently acceptable comfort 10 days after having been admitted to our unit.

Case 2

Shortly after the previous case, the nursing unit manager and the senior program director contacted me while I was away from the hospital where the palliative care unit was housed. I knew before I even spoke to anyone that it was a serious situation because the call was sent simultaneously to my pager, cell phone, and home phone. “We have a family here in great distress about the condition of their father, who was admitted a few days ago,” they told me. “They claim that ‘we are killing him’ and that, if we do not do something immediately, they will go to the press, complain to the government, and sue us.”

As I listened further to the story of the patient and the family’s threats, it became apparent that it would be necessary for me to return to the hospital that evening to assess and try to de-escalate the situation. I had long ago learned that these types of threats were usually a reflection of great personal and family distress. Often, those making the threats do not even realize the true nature of their distress, and, although family members are unlikely to follow through with their threats, these situations often have a very frightening and alienating effect on the frontline clinical staff. The concern, as expressed by the two senior nursing staff who called me, was that the family was claiming that the patient’s sudden decline from the day he was transferred to our facility from another palliative care unit was “too sudden,” yet they seemed to understand that his pancreatic cancer had metastasized to his liver and lungs. Nevertheless, in their eyes, his rapid decline probably meant that we were overmedicating him, and they indicated this was so that he would “die fast so [we] could have the bed for another patient.”

When I arrived on the unit, I first reviewed the patient’s health records, which included symptom descriptions of agitation with only modest physical discomfort. I also reviewed his preadmission medications and the changes that were made to his medication regimen after his admission to our facility. I noted that 3 days after the patient was admitted, two physicians other than the admitting physician, who was also his attending physician, saw him during the night or weekend period when they were on-call. Each of them modestly decreased his dosage of haloperidol, which had been increased upon admission to the unit because the patient displayed severe agitation. Although other medication changes also had been made, including with his opiate analgesia regimen, these changes were not thought to contribute to the change in his level of consciousness. By the time I saw him, his haloperidol dose was similar to that listed in the initial transfer orders. I examined the patient, who was very somnolent and clearly had clinical evidence of metastatic liver disease with mild icterus. He appeared severely dehydrated, and he confirmed his family’s observations that he had not been eating or drinking for the previous few days. This lack of sustenance was his family’s primary concern.

I met with three of the patient’s family members: his two sisters, who regarded him as a father because he raised them after their mother died, and the daughter of the eldest sister. The two sisters shared the healthcare proxy status, but communication primarily occurred with the older sister because the younger sister spoke very little English. The older sister relayed to me the whole story of the patient’s current illness and transfer to our facility, just as I had heard it from the nurses who called me earlier that day. Although I had already been briefed on the situation, I knew that it was important to hear it again directly from the family, and I did my best not to interrupt the narrative or to correct or explain why the physicians who treated the patient had implemented changes to his regimen. An aggravating factor for the family appeared to be that all communication between them and the attending physician occurred over the phone, rather than in person, because of scheduling conflicts.

After I listened to the family’s concerns, I explained that it was not my role at this moment to explain all of the steps that had occurred previously, but rather to see if there was anything I could do to improve the patient’s present condition and make him less somnolent. I told them that, based on the nurses’ recount of the patient’s history, I had ordered the administration of naloxone earlier that day to counteract any remaining opiate in his system. Although the last opiate dose had been given in the morning, I thought there might still be opiate circulating because of his liver metastases. I had all psychotropic medications, including the haloperidol and the small doses of trazodone he was also receiving, put on hold. His other medications for chronic obstructive pulmonary disease (long- and short-acting beta-agonists and steroid inhalers) and his scopolamine patch (to manage his significant secretions) were to be continued. He was also given subcutaneous fluids through two sites with a method known as hypodermoclysis,⁵ which I had requested to start immediately after my initial phone call with the nurses. The sisters concurred that an intravenous infusion would be uncomfortable and that it would be difficult to find his veins considering his state of dehydration. They agreed with my care plan, and it was continued with some alteration in the amount of fluid that was provided.

Within a few hours, the patient gradually began to awaken from his somnolent state. Over the next few days, he was able to communicate in his limited fashion and to take some pureed food and fluids by mouth, much to his family’s deep satisfaction. Other than some intermittent agitation, he appeared reasonably comfortable. Although his sisters were content that he was “better,” they continued to question why he was given so much medication soon after admission, despite our attempts to explain that the actual amounts of medication given to him seemed justified because of his distressing agitation and that his sensitivity to their sedative affects were not anticipated. In addition, although the family knew that he had been living with dementia before his malignancy was diagnosed, they seemed to ignore that aspect of his illness. They were taken aback by what appeared to them to be a rapid decline in his status and the fact that he could not eat, which was a primary concern for them. This emphasis on food reflected their strong cultural inclination to focus on eating as an expression of love and as providing comfort, even at the very end of life. They had difficulty accepting during follow-up discussions that his prognosis was poor and that death would be imminent, despite acknowledging this when they agreed to have him transferred to our palliative care program. The older sister kept reiterating the fact that he was still with them and that she wanted us to do everything we could to keep him alive for as long as possible. She did, however, acknowledge the need for medications for his agitation, which at times was quite pronounced, but she said the following each time she agreed to the medication: “Just a little. We do not want him sleeping all the time.”

Two weeks after my initial meeting with the family and 2.5 weeks after his admission, the patient died in the presence of one of his sisters, which was very moving for both her and the staff, many of who were in attendance. After the patient’s death, members of his family—including his sisters—thanked the staff profusely for the care we provided to him.

Discussion

The terms client-centered care or patient-centered care are used frequently in palliative care and hospice programs and are often incorporated in mission statements and in the statements of values and principles of palliative and hospice care units and programs. The challenge with the concept of “client-centered” care is that it can be interpreted in many different ways when one is attempting to identify the client or patient in the center and becomes more clouded when there are healthcare proxies acting on behalf of the client or patient.^6-9 Other challenges include navigating through the complex nature of family dynamics, relationships, and belief systems, all of which can influence patient care.^10-13 If the proxies and patient appear to agree on the goals of care, the concept is likely to work relatively well; however, if there is some discordance between what the family members (usually the healthcare proxy) wishes and what the healthcare staff believes the patient would want, developing a care plan can be more challenging. In extreme cases of discordance, it is always possible to take legal steps to remove the healthcare proxy from that role, but this is an extreme step that most healthcare providers and institutions would be loathe to take unless the implications for the patient are profound and might constitute negligence or completely inappropriate—or even harmful—care.

Most of the time, if enough effort goes into explaining the treatment plan to the patient’s family, his or her family members will work with the palliative care or hospice program’s professional staff team to ensure a comfortable death for their relative. Sometimes family members imply that they understand what is meant by end-of-life care within the context of a palliative care or hospice program, yet are not fully prepared for the reality of death and a clinical approach that does not attempt to treat commonly recognized events, such as infection or malnutrition, with anything beyond comfort measures. They also may not fully grasp that the comfort measures generally used include medications that may cause somnolence as a means of easing discomfort, pain, and agitation.

In the first case report, the family members’ request for palliative sedation as the method of treatment was inappropriate considering the level of the patient’s symptoms and our ability to address them adequately using standard palliative care symptom management modalities; these modalities are based on a combination of effective analgesics, such as opiates, and antiemetics are added if the condition or the opiates are causing nausea.^1-4 Medications should be used to treat comorbid cardiac and respiratory symptoms, which are often eased by opiates and the judicious use of medications with antidepressant or anti-agitation effects. Sometimes corticosteroids are used to enhance feelings of wellbeing and to decrease symptoms associated with swelling and inflammation, augmenting pain management.

Had there been persistent insistence from the family to use palliative sedation, it might have been necessary to seek a legal remedy, but our explanations were sufficient to help them accept what was being done, and eventually they realized the appropriateness of the treatment plan for their family member. Further, because the patient’s wife was the healthcare proxy and she disagreed with palliative sedation, there was no real fear of any legal action against the unit, as threatened by the son.

Regarding the second case patient, had the family insisted on feeding him despite his recurrent serious aspiration and agitation upon being fed even by his sisters, or had they not allowed us to administer medications for his agitation when he clearly was suffering unnecessarily, we may have had to seek a legal remedy. Fortunately, the family accepted our plan of care and ultimately thanked us for the care we provided despite their initial misgivings and vociferously expressed concern.

Conclusion

The provision of high-quality, compassionate palliative and hospice-based care is the goal for healthcare providers who have chosen to provide end-of-life care as their professional focus. For individuals who combine the philosophy of palliative and hospice care with the care of elders, even greater challenges may occur because of the complex nature of family dynamics, relationships, and belief systems, among other factors, which often influence patient care. It can be challenging for healthcare providers to navigate the many potential minefields when such challenges exist. When successfully navigated, however, the satisfaction that results from achieving a clinically compassionate, caring, and comfortable death for the patient as well as solace for the family are worth all of the effort.

References

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3.     Cooney GA. Palliative sedation: the ethical controversy. Medscape Education. www.medscape.org/viewarticle/499472. Published 2005. Accessed February 6, 2013.

4.     Maltoni M, Scarpi E, Rosati M, et al. Palliative sedation in end-of-life care and survival: a systematic review. J Clin Oncol. 2012;30(12):1378-1383.

5.     Sasson M, Shvartzman P. Hypodermoclysis: an alternative infusion technique.
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7.     Menzies H. Patient-centred care: it’s about relationships. Social Policy in Ontario. https://spon.ca/patient-centred-care-it%E2%80%99s-about-relationships/2011/07/14. Published July 13, 2011. Accessed February 6, 2013.

8.     Janssen DJ, Spruit MA, Alsemgeest TP, Does JD, Schols JM, Wouters EF. A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases. Int J Palliat Nurs. 2010;16(4):189-194.

9.     Lloyd-Williams M, Reeve J, Kissane D. Distress in palliative care patients: developing patient-centred approaches to clinical management. Eur J Cancer. 2008;44(8):1133-1138.

10.   Vincent JL. Cultural differences in end-of-life care. Crit Care Med. 2001;29(suppl 2):N52-N55.

11.   Coolen PR. Cultural relevance in end-of-life care. EthnoMed. https://ethnomed.org/clinical/end-of-life/cultural-relevance-in-end-of-life-care. Published May 1, 2012. Accessed January 6, 2013.

12.   Clayton JM, Hancock KM, Butow PN, et al. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust. 2007;186(suppl 12):S77-S108.

13.   Lopez SA. Honouring cultural diversity at the end of life. Social Work Today. 2007;7(6):36.

Disclosures:
The author reports no relevant financial relationships.

Address correspondence to:
Michael Gordon, MD, MSc, FRCPC
Baycrest Geriatric Healthcare System
3560 Bathurst Street
Room 1C24
Toronto, ON
M6A 2E1
Canada
m.gordon@baycrest.org