Introduction
Psychological suffering at the end of life (EOL) is a universal experience (Block, Reference Block2006). This stems from many sources including: grief about current and anticipated losses, fear and uncertainty about the future, unresolved issues from the past, and concerns about loved ones. These are all further impacted by the developmental stage of the patient, culture and society, financial issues, spirituality, family dynamics, a patient's vulnerabilities and existential concerns, as well as coping style (Block, Reference Block2006; Krikorian et al., Reference Krikorian, Maldonado and Pastrana2020). When planning how to best support the well-being of patients and their families at EOL, it is important to consider preferences and values, and how to achieve this through shared decision-making and clear communication (Steinhauser et al., Reference Steinhauser, Christakis and Clipp2000). Also, when considered collectively, these views and relationships provide a sense of security that might help to mitigate fears associated with one's inevitable death (Maxfield et al., Reference Maxfield, Solomon and Pyszczynski2010). According to Maxfield et al., an individual's self-esteem secured by the strength of attachments to one's parents, in addition to other worldviews, can provide a buffer against the anxiety related to one's mortality. As one might expect, being in close contact with those that helped to shape one's self-esteem when facing EOL would help to significantly reduce emotional suffering at this time.
In addition to physical comfort, patients describe a “good death” to include being at peace with God, being surrounded by loved ones, receiving treatments that are aligned with their wishes, being treated with respect and dignity, and being afforded the opportunity to resolve conflicts and have a sense of completion within relationships (Steinhauser et al., Reference Steinhauser, Christakis and Clipp2000; Carr et al., Reference Carr, Boerner and Moorman2020). Krikorian et al. (Reference Krikorian, Maldonado and Pastrana2020) found that despite these core elements, notions of a good death also vary from individual to individual and are fluid in nature, changing during the process of dying. This underscores the importance for healthcare workers to not only inquire about the dying individual's wishes, conflicts, and particular societal conditions, but to reassess for these along the disease trajectory. These factors have been threatened during the COVID-19 pandemic, as the emphasis on infection control has demanded public health restrictions to protect patients, family members, and staff. This included stringent changes to hospital visitation policies, which unfortunately has led to amplified feelings of pain and loss at EOL (Carr et al., Reference Carr, Boerner and Moorman2020).
Isolation has long been known to contribute to higher levels of emotional distress and poorer mental health among those hospitalized (Brooks et al., Reference Brooks, Webster and Smith2020; Usher et al., Reference Usher, Bhullar and Jackson2020). Patients in isolation reported higher levels of anxiety depression, and anger and a decrease in self-esteem and sense of control (Gammon, Reference Gammon1998). For family members of isolated patients, being barred from visiting at the EOL, puts them at risk for complicated grief (Chochinov et al., Reference Chochinov, Bolton and Sareen2020). The survivor is more likely to experience depression, anxiety, and anger when they did not have the opportunity to answer questions such as “was my loved one in pain or alone when they died?” or have the opportunity to say “goodbye” (Carr et al., Reference Carr, Boerner and Moorman2020; Chochinov et al., Reference Chochinov, Bolton and Sareen2020).
Herein, we present a case of a young patient with a distressing illness and treatment course whose hospitalization during the COVID-19 pandemic compounded the family's distress due to visitor restrictions, resulting in considerable distress for the healthcare team.
Case description
Mr. A was a man in his 20s with a refractory hematologic malignancy and no prior history of illness, initially diagnosed at an outside facility after three to four weeks of increasing fatigue, persistent vomiting, and moderate diarrhea, in addition to night sweats. He was initially started on curative treatment, but he presented with persistent disease after 28 days. He later began a clinical trial, with plans to undergo allogeneic stem cell transplantation. After starting on the trial, he showed persistent disease followed by two hospitalizations requiring mechanical ventilation due to acute hypoxic respiratory failure from a fungal pneumonia. He was discharged to a rehabilitation facility while on long-term antimicrobial therapy but had to be transferred back to our cancer center after two days.
Upon admission, Mr. A was referred to our palliative care team for assistance with symptom management. He had pain in the thoracic spine that worsened with deep inhalation and was managed with as needed doses of oral and intravenous hydromorphone. As his condition continued to deteriorate and his pain worsened, he was placed on hydromorphone continuous infusion.
Mr. A was also referred to supportive care psychology to assist with emotional distress. His primary concern was his fiancé and her coping. Through follow-up psychology sessions, our team learned that the patient recently became engaged after dating for 3 years. Mr. A expressed increasing levels of distress that he could not be with his fiancé and family. He was very close to his father, his stepmother who raised him, and his biological mother. The hospital had visitor restrictions that prevented them from all being together as he was only allowed one visitor. Early on he opted for his fiancé to be his medical power of attorney (MPOA) and the person who would stay with him during hospitalizations. The patient's fiancé frequently expressed how difficult her position was as the liaison between the patient, medical staff, and family. This was also distressing for the healthcare team who empathized with his need to receive in-person support from all three of his parents, but also understood the necessity of the visitor restrictions.
Mr. A's condition continued to decline, and he began to require high flow oxygen. Our palliative care and ICU teams discussed goals of care given his poor prognosis. The patient, his family, and his care teams favored a comfort-based approach. Thus, he was transitioned to our Palliative and Supportive Care Unit (PSCU) for EOL care. In addition to management of pain and dyspnea, our integrative approach involved continued counseling with our psychologist and our chaplain team. Mr. A expressed that although he understood his prognosis and imminence of death, he was experiencing anticipatory grief for the dreams he had yet to experience, including taking a vacation, getting married, and having children. He expressed his desire to marry his fiancé and talked about his wish for her to have their children as he was previously able to bank his sperm.
The interdisciplinary team on the PSCU worked to assist this couple in fulfilling their dream. The patient was awake, alert, and oriented for the planning and ceremony, and was able to participate fully. His father and biological mother were granted exceptions to the visitor policy to be present, but his stepmother, who raised him and who he viewed as a mother, could only attend the ceremony via video conference, along with about 30 other family members and friends.
The patient passed peacefully in the PSCU two days after he was married.
Discussion
This case illustrates how visitor restrictions during the COVID pandemic can adversely impact the well-being of patients, family, and healthcare providers.
The COVID-19 pandemic has forced medical and care facilities across the world to make some very difficult decisions regarding how to maintain a safe working environment by minimizing disease transmission, while also continuing to provide quality care sensitive to the psychosocial needs of patients. The physical and psychological impact of isolation and quarantining has long been studied, with most research indicating the presence of a family member/caretaker having significant benefits for the psychological well-being of the hospitalized patient (Goldfarb et al., Reference Goldfarb, Bibas and Bartlett2017). Higher levels of anxiety and depression, with lower levels of self-esteem and sense of control have been found in those isolated due to infection as compared to those who were not isolated (Gammon, Reference Gammon1998). The physical presence of visitors is also shown to reduce symptoms of delirium in patients, thus helping to improve recovery and shorten hospital stays (Granberg et al., Reference Granberg, Engberg and Lundberg1999; Global Council on Brain Health, 2020). Unfortunately, these caregivers are known to systems as “visitors,” most of whom have been restricted from being with their loved ones during the pandemic.
In the words of Dr. Jason Karlawish, the co-director of the Penn Memory Center, “When this pandemic is over, we ought to compare the outcomes of care in hospitals that recognized the role of caregiver … and those that did not. I'd bet we would find that when caregivers were present, resources and lives were saved. Even more valuable will be the dignity we preserved when faced with a pandemic that threatened humanity … ”(Karlawish, Reference Karlawish2020)
When we consider mortality, it has been found to increase by 26–32% for those socially isolated, while a person's risk of dying increased by 26% for those feeling lonely (Holt-Lunstad et al., Reference Holt-Lunstad, Smith and Baker2015). As many people fear dying alone, the pandemic has emphasized the magnitude of concern about a loved one facing these same fears. Although for some, the presence of strangers in the form of healthcare workers might help to lessen these fears, for others, this is unacceptable if a person is going to experience a good death. Exploring a patient's wishes regarding how they choose to experience death, though, is critical. Just as living alone is not an indication that someone has limited social connections or is lonely, dying alone may very well be a choice they wish to make (Nelson-Becker and Victor, Reference Nelson-Becker and Victor2020).
Maintaining dignity is an important component of what we offer on our PSCU and has long been a benchmark of providing quality palliative care. Dignity therapy, by which the process of generativity can be encouraged and explored to allow patients an opportunity to reflect on and invest in those they will leave behind, is one avenue to enhancing this care (Buonaccorso et al., Reference Buonaccorso, Tanzi and De Panfilis2021). Through the process of generativity, Buonaccorso et al. found discussions about significant moments and thoughts that helped to shape how a person will be remembered, in addition to resolving conflicts, seeing family, and sharing their hopes and dreams for those they will leave behind, to be important to not only helping the patient, but the family left to grieve their loss. This sense of completion in relationships has been found to reduce suffering and improve quality of life (Steinhauser et al., Reference Steinhauser, Alexander and Byock2008). Families and patients barred from visitation during COVID are often denied the opportunity to achieve this sense of completion. Additionally, not having access to their dying loved one, may put families at risk for complicated grief, leaving them with many unanswered questions and no opportunity to confront the reality of death (Chochinov et al., Reference Chochinov, Bolton and Sareen2020). Indeed, several researchers have proposed that there will be a significant increase in complicated grief as a result of the pandemic (Goveas and Shear, Reference Goveas and Shear2020; Jordan et al., Reference Jordan, Wotring and McAfee2022). Families are facing these and additional stressors including the possibility of the patient dying alone or in isolation, questioning the care of the dying person, and limited opportunity to receive support, all of which are impacting pre-loss grief (Stroebe and Schut, Reference Stroebe and Schut2021). Furthermore, limited/no visitation may mean less family/caregiver access to interdisciplinary and medical teams thereby impacting a sense of preparedness for death. High pre-loss grief and low preparedness for death are both associated with complicated grief (Nielsen et al., Reference Nielsen, Neergaard and Jensen2016; Treml et al., Reference Treml, Schmidt and Nagl2021).
As we have witnessed time and time again since early 2020, limitations on visitation of family members have greatly influenced a patient's hospital experience and medical outcomes. This is especially true when facing EOL. It is important that we look at how this current experience has impacted ourselves as clinicians, as well as the patients and the caregivers we serve. Allowing virtual visitation through electronic measures may help to ease this distress. Providing phone chargers, iPads for virtual visits, and a system that supports virtual follow-up sessions are helpful resources moving forward. It won't take the place of holding a hand or giving a hug, but it just might improve the feeling of connectedness and completion with loved ones, especially near the EOL (Wakam et al., Reference Wakam, Montgomery and Biesterveld2020). Adopting technological measures into practice is not the only means in which challenges to providing human-centered care in a pandemic can be addressed. Palliative care physicians can help educate and support the primary team physicians on expressing empathy, handling strong emotional responses from patients and families, along with training them on how to have difficult conversations (Powell and Silveira, Reference Powell and Silveira2020). This is especially important given the limited number of palliative care providers available (Drutchas et al., Reference Drutchas, Kavanaugh and Cina2021).
Palliative care providers have also been experiencing moral distress as a result of visitor restrictions. A recent survey conducted of pediatric palliative care providers showed that many had negative memories of not being able to provide what they felt would be the best possible care, along with witnessing family distress (Wiener et al., Reference Wiener, Rosenberg and Pennarola2021). This moral distress experienced has prompted studies looking that the increased emotional impact of the pandemic and interventions to aid. An example is provided by Drutchas et al., where a group of researchers used virtual meditation sessions and group reflections by a psychologist as interventions to help palliative providers cope with the increased emotional distress (Drutchas et al., Reference Drutchas, Kavanaugh and Cina2021). Further research is needed to know how to help maintain benchmarks of palliative care despite limitations/restrictions imposed by hospital policy.
