Psychosocial intervention in palliative care: What do psychologists need to know

Abstract

Emotional and existential suffering is prevalent in advanced diseases and psychologists have valuable skills to support people in this time of life. Yet, psychologists are rarely integrated in palliative care and relevant training is sparse. Being integrated in other areas of health, it is likely that we will be supporting these patients, whether integrated in a specialized team or not. This article is meant to serve psychologists, already skilled in the art and science of psychosocial intervention, who may find themselves supporting patients with advanced disease. Relevant history of palliative care is provided to elucidate palliative philosophy and approach. Evidence-based existential interventions will be reviewed. Integration of psychological models and both palliative theory and practice is provided to support palliative-appropriate case conceptualizations. Finally, case examples are provided throughout to help readers reconcile their existing practice in this domain of care.

A was an 82- year old man with metastatic cancer, admitted to an inpatient palliative care unit for symptom control and preparing to transfer to hospice. I was working on this interdisciplinary unit as a clinical psychologist. The team asked me to see A because his low mood was interfering with their interventions for pain and malnutrition. I met A in his hospital room. He was a soft-spoken man. His mood was sad and affect was constricted. His body was emaciated and weak. I wondered if his difficulty engaging with other clinicians would predict an unwillingness to talk to me. When I introduced myself, I noticed a glimmer of what I assume was hope, a small but perceptible boost in his posture, and consistent eye contact despite a weak body. I suspected that he yearned to connect. He was surprisingly forthcoming and engaged. I remember him like a hungry boy popping his head above the kitchen counter. Rapport was easy and he laid his story out for me to piece together. He felt like he was failing. Prior to his advanced cancer, he was active and had few significant health threats. His illness was abrupt, progressive, and he didn’t recognize his own body anymore. He didn’t know how to cope with uncontrollable physical decline, loss of his usual coping tools, and uncertainty of what lay ahead. He felt alone in the hospital. He longed to be with his wife, who visited daily for a few hours. Well-intentioned messages from the team about his medical needs (e.g. “You need to eat more,”) were interpreted as failing as a patient. He was in a pattern of pursue-withdraw with the team: the more they intervened (“eat more, walk more,”) the more he withdrew, which heightened their attempts to intervene, which exacerbated his sense of failing and thereby his withdrawal. When I arrived, he was eager to feel heard. I listened to his sources of suffering and my interventions were 3-fold: practical (bring him a portable phone to call his wife), emotional (tie together his attachment history, his current threat to survival, use evidence-based intervention to address his suffering), and interpersonal (help the team adjust the mismatch between their physical interventions and his individual needs).

The role of psychology with patients living with advanced disease or at end-of-life may most apparently be assessing and addressing diagnosable mental health concerns. This is especially if these concerns interfere with medical intervention. Emotional and existential suffering is prevalent in advanced disease however advanced or end-stage illness and mental health concerns are not mutually inclusive (Miovic and Block, 2007; Mitchell et al., 2011; Rattner, 2022). Internationally, prevalence of major depression in palliative care is 14.3%, 9.6% for minor depression, and 15.4% for adjustment disorders. Depressive disorders are most prevalent and have significant impacts on functioning and quality of life. Minor depression is a particular concern because other interventions (e.g. psychopharmaceuticals) are not effective on subclinical presentations and many palliative care services lack clinicians able to provide consistent and specialized psychosocial intervention. Psychologists are less often integrated in palliative care than our psychosocial colleagues and training in this domain is sparse (MacDonald, 2015; O’Connor et al., 2006; Payne and Haines, 2002; Robinson et al., 2021). There are a number of factors that might contribute such as scope, cost, and history (Golijani-Moghaddam, 2014; O'Connor and Fisher, 2011; O’Connor et al., 2006).

In this article, I aim to outline what I found were my contributions as a psychologist in this domain of care, integrated in an experienced interdisciplinary team. I will provide an overview of relevant history of palliative care, which is different than other areas of medicine and health psychology; the evidence-based existential interventions that have been developed exclusively for this population; aspects of my advanced psychosocial skillset that I found most helpful; and a brief discussion on how some common evidence-based models of psychotherapy might be applied in this population.

This article is meant as a primer on palliative psychosocial intervention rather than a comprehensive guide. It is grounded in my personal experiences. The experiences of others may have more/less overlap depending on factors such as setting (e.g. inpatient/outpatient, structure of local palliative care services) or personal factors (e.g. therapy orientation, personal and/or local cultural considerations). The inpatient palliative care unit described herein does serve mostly patients with cancer (Bandeali et al., 2020). This is not necessarily true for palliative care as a discipline yet remains a quality of this service for reasons beyond the scope of this article. While many of the points made in this article may also be true for our psychosocial colleagues (American Psychological Association, 2017), I write for an audience of psychologists. History with palliative care, training programs (or lack thereof) in palliative care, and relationships within current health care systems would vary across psychosocial disciplines.

History of palliative care

Palliative care is unique from other branches of medicine. The focus of this tradition is to palliate, that is, cloak one’s suffering, as oppose to cure the primary disease. It is often erroneously equated with death. This was true when first developed but its scope has evolved immensely (Carstairs, 2010; Cellarius and Upshur, 2014; Clark, 2007). Prior to the 20th century, medical care focused on palliation. With progress of curative treatments in the early 1900s, attention shifted toward cure and anyone whose cancer was deemed incurable was left to suffer without support (Clark, 2007; Mount, 1980). In 1967, palliative care was first founded for this unserved patient population by Dame Cecily Saunders. She and her colleagues began clinical intervention, research, and education in palliation. This clinical and empirical work revolutionized care for patients dying with cancer. Their aim was to allow patients to minimize distress and their work improved the patient experience drastically. Their interdisciplinary and non-curative approach remains a template for modern end-of-life care (World Health Organization, 2023).

Palliative care understands suffering to be multidimensional (Clark, 2007; Mount, 1980; Saunders et al., 2004). Palliative care’s holistic theory of “Total Pain” states that pain has multiple contributing factors, which can be physical, social, emotional, spiritual, or other (Saunders, 2000; Saunders et al., 2004). Ideally, palliative care involves interdisciplinary teams ¹ (MacDonald, 2015; O'Malley et al., 2021; Robinson et al., 2021). It supports patients with any disease, those with cured disease but ongoing symptom burden, those who are living with chronic illness, and their support people (World Health Organization, 2023). Yet, despite increased scope of practice and positive outcomes (Rogers et al., 2020), referrals to palliative care remain late in the illness trajectory and referrals for illnesses other than cancer remain low (Hawley, 2017; Salins et al., 2020; Wentlandt et al., 2012).

Palliative Care has made its mark in many health care systems and, although disproportionate, it has expanded worldwide (Clark et al., 2020). However, death remains a difficult topic despite it being a certainty for every single being. Many cultural groups remain death-denying (Carstairs, 2010; Waldrop, 2011; Williams et al., 2010). This may manifest as emphasizing the importance of thinking positive or accusing the dying of giving up. Health care professionals remain wary of mentioning this domain of care for fear of the patient feeling abandoned. Institutions rebrand with terms that are vague or indescript (e.g. Hawley, 2017; Salins et al., 2020; Wentlandt et al., 2012). Yet dying is an important and meaningful milestone. Relationships mend, people share loving words and gratitudes that have never been expressed, realizations about the fragility of life cause shifts in priorities. Many people who reach this milestone feel ready for death, expressing an appropriate wish to die (Nissim et al., 2009). In Western culture, we celebrate many milestones: birth, coming of age, graduation, marriage. Yet when it comes to dying, we resist.

Facing death denial is an important area for psychologists to address. It is possible, and arguably common, for patients in the Western world who are facing death (imminent or eventual) to feel unable to discuss it with loved ones or even their medical providers (e.g. Salins et al., 2020). Unfortunately, inability to discuss realistic fears might become a barrier in healing, the end-of-life process, and the ability to plan practically for themselves and their families (e.g. Corr, 1999). Psychologists might play a role in helping interdisciplinary team members, who are distressed about discussing death, to help create this space for patients and families (Barclay and Maher, 2010; Sutherland, 2019). Avoiding conversations about death by using unclear euphemisms or focusing on what can be done (rather than what can be done alongside dying) may leave patients confused and with difficulty adjusting emotionally (Barclay and Maher, 2010; Bergenholtz et al., 2020; Sutherland, 2019). Psychologists can explain that patients and families need space to express their experience, to ask questions and receive honest answers, and plan with accurate information. We may guide our colleagues to assess patient readiness and preferences for conversations about end-of-life, and to allow for an open conversation about death within these boundaries. This can help emotional adjustment, sense of collaboration and support between patients and medical providers, and bolstered hope (Barclay and Maher, 2010; Bergenholtz et al., 2020; Sutherland, 2019). Our own conversations about death may also model this.

The literature has continued to show that management of spiritual, emotional, and social suffering are important to the management of physical symptoms (Breitbart et al., 2004; Gorin et al., 2012). Lack of psychosocial-spiritual health emerges as the most commonly as the reason for desiring a hastened death for people with disease (Breitbart et al., 2000; Chochinov et al., 1998; Rodin et al., 2009; Rosenfeld et al., 2006). This might mean that the aforementioned late referrals to palliative care, death denial, or lack of skilled psychosocial interventions contribute to unnecessary suffering and even foreshortened survival (Nipp et al., 2019; O'Connor and Fisher, 2011).

Palliative care retains its origins of team-based practice (World Health Organization, 2023). The National Institute for Health and Care Excellence (NICE) published a model of interdisciplinary delivery of psychological assessment and support for people living with cancer, which can be applied to palliative care (National Institute for Health and Care Excellence, 2004: 78–85). In this model, they differentiate levels of interventions deliverable by different team members. Similarly, Fitch (2008) produced a model differentiating levels of interdisciplinary needs in supportive care. Combining these, Level 1 is recognizing psychosocial needs, deliverable by any team member and includes interventions of information, compassion, communication, symptom management and general psychological support; approximately 20% of patients will require this level. Level 2 is screening for distress, deliverable by those with additional expertise and include interventions of specific techniques and problem solving, connecting patients with education and peer resources; approximately 30% will require this level. Level 3 is assessing distress and diagnosing distress and symptom management, deliverable by accredited team members, and interventions include counseling from an explicit theoretical framework; 35%–40% of patients will require this level of need. Level 4 is diagnosis and treatment of psychopathology and management of complex needs, deliverable by specialists and includes specialized physical and psychosocial interventions; approximately 10%–15% of patients will require this level of care.

Palliative psychosocial interventions

The palliative psychosocial oncology community has developed many evidence-based interventions for those with advanced or terminal illness (Breitbart et al., 2004; Saracino et al., 2019; von Blanckenburg and Leppin, 2018). Origins include Frankl’s learnings from being imprisoned in a Nazi concentration camp (Frankl, 1967), Kübler-Ross’s early works on the end-of-life experience and grief (Kübler-Ross and Kessler, 2005), meaning-making (Breitbart et al., 2010), and Supportive-Expressive Group Therapy (Spiegel and Yalom, 1978). More recent developments include specifically designed interventions for palliative and end of life care, such as Dignity Therapy (Chochinov, 2011; Iani et al., 2020) and Managing Cancer and Living Meaningfully (CALM; Rodin and Hales, 2021). Such interventions can be beneficial for those suffering with existential psychosocial-spiritual concerns, which might include hopelessness, feeling like a burden, loss of dignity, death anxiety, and depression (Saracino et al., 2019). These interventions are a good resource for intervention in a stepped care model and can be provided by a variety of interdisciplinary team members at Levels 3 or 4 of the aforementioned models (Fitch, 2008; National Institute for Health and Care Excellence, 2004) and are more effective when delivered or supervised by specialized psychosocial clinicians (Fulton et al., 2018; O'Malley et al., 2021; Rodin et al., 2020). They also allow for flexibility in session numbers, considering that with advanced illness, we can have single session relationships or multiple sessions over months or years, given ever advancing treatments and survival time with different diseases (e.g. Boele et al., 2019).

The role of psychologists

Psychologists bring strengths to this interdisciplinary area of care. We assess, diagnose, and treat mental health concerns (American Psychological Association, 2023b; Canadian Psychological Association, 2023), the skills for which we are most widely recognized. We do so with complexity. We case conceptualize and can integrate multiple theoretical frameworks (John and Segal, 2015; Sperry and Sperry, 2020). We collaborate and consult with our interdisciplinary colleagues. We have expertise in recognizing and utilizing process in the room (Walton, 2014). We are researchers, adept in using the academic literature to inform our practice and contributing back to the literature to inform the field.

Case conceptualization

One of the strengths of a psychologist is the ability to distil complex concerns into one comprehensive theory (John and Segal, 2015; Sperry and Sperry, 2020). The case conceptualization is one of the skills we can use to help support our patients and interdisciplinary colleagues. Conceptualizations help understand patient concerns in one large picture, including how the concerns developed, affect the patient, what factors maintain and exacerbate these concerns, what else contributes to these concerns. It might be done in different ways depending on a clinician’s knowledge of different theoretical orientations (e.g. Kuyken et al., 2008). We traditionally use these to inform our treatment plans and interventions. Receiving a conceptualization in itself can be therapeutic for patients: Distilling a patient’s concerns, which may seem disparate and overwhelming to the patient, into a cohesive understanding of their suffering can help them feel heard, normalized, and perhaps even relieved. Conceptualization as an intervention can be particularly useful in a palliative setting, where psychologists might only meet with patients once depending on disease, stage, setting, and when referral is made.

Assessment

Assessment in palliative care may include formal assessment, such as capacity assessments (Ehrman et al., 2021) or cognitive testing (e.g. Hjermstad et al., 2004). There may be a role for psychodiagnostic testing, including personality or emotional inventories (Den Boer et al., 2019; Kelly et al., 2006; Miovic and Block, 2007). It may include informal assessment, building a conceptualization with the intention of informing psychotherapeutic intervention.

Evidence-based therapeutic orientations and interventions

Like in any new area of practice, there is background information to learn, such as differences between chronic pain and cancer pain, common psychosocial difficulties for a given populations, particularities of the given physical illness. Levin and Applebaum (2014) have published an excellent guide on cognitive therapy for cancer in acute care, which provides excellent psychoeducation on coping with cancer and treatment. Below I focus on conceptualization within palliative care using multiple evidence-based orientations (Fulton et al., 2018). This is meant as a primer for clinicians to use existing psychotherapeutic orientations when supporting patients with palliative needs.

Cognitive behavioural therapy (CBT)

CBT considers that emotional and behavioral reactions are influenced more by interpretations, that is, thoughts and beliefs, than by the triggering situation. CBT may include physical sensations, a particularly useful factor in health psychology (Beck and Fleming, 2021; Thoma et al., 2015). This model fits with the theory of Total Pain, because there is room to conceptualize mutual reinforcement of multiple domains of suffering (emotional, social, spiritual, physical). Consider how the situation (terminal illness, palliative care, family dynamics, hospital admission) affects usual coping. When considering the situation and assessing thoughts, history with health and medical care might be particularly important. Any given situation might trigger a cascade of thoughts (“I’m weak for having kidney failure,” “I can’t disappoint my family,” “How could my higher power abandon me like this?”), physical sensations (fatigue, nausea, which may also exacerbate physical symptoms from the illness or treatment), emotions (sadness, fear, shame) and behaviors (pursuing additional treatments, social withdrawal, aggression with medical team). The behaviors might attenuate acute discomfort and provide short-term relief and may also reinforce the cycle in the long-term. Consider core beliefs that might be triggered. For example, “I’m responsible for the emotions of others” might prevent a patient from meeting their own needs; “Others will fail me” might prevent planning for personal care when dealing with progressive and permanent debilitation.

Example

B received a chronic diagnosis that will eventually become terminal (situation). She reports that over the past year, her mood fluctuates easily with stressors and she has low motivation to participate in previously enjoyed activities. She used to be an active person: traveling, organizing social events, caring for her grandchildren. With her illness and the related symptoms such as fatigue (illness-related physical sensation), she has withdrawn from her meaningful and enjoyable activities (behavior). This has been influenced by her history of illness. She describes being sick as a child and requiring a lot of her parent’s attention (Core belief: “I’m weak”). When hospitalized, she was often isolated from her family who, in the 1940s, were unable to visit her during admission (Core beliefs: “Others will abandon me.”). She reports that she feels sad, ashamed, and scared (emotions) that she is losing herself (thought). She prefers to hide the part of her that is sick and focus on the part of her that is active and helpful. Withdrawing (behavior) hides her debilitation but worsens her fatigue (physical sensation), and thereby exacerbates the cycle.

CBT interventions

• - Behavioral activation to bolster energy and mood. Include psychoeducation on how the cycle exacerbates itself, for example “Both illness and low mood can cause fatigue, leading into a vicious cycle of feeling worse, doing less, which makes us feel even worse and do even less. While we might have limited ability to relieve illness- and medication-related fatigue, we do have the ability to improve mood-related fatigue by staying active within our abilities.” Interventions could include goal-setting, scheduling, pacing, and emotion-tracking. Help support B in choosing appropriate goals that will be manageable and meaningful. Ideas for admitted patients or those with more debilitation might include walking to the nursing station; sitting up in bed when family visits; sending loving messages in a card, text, or voicemail.

• - Cognitive interventions to address automatic thoughts, assumptions, and core beliefs that might reinforce the cycle and suffering. Address these as you would in any other setting. B’s core beliefs that she is weak and others will abandon her might come up in different ways, such as “I should be able to tolerate this pain,” “I don’t want to bother the nurse for more blankets,” or “My family is too busy, I don’t want to bother them.” These rigid longstanding beliefs can be especially heightened in times of threat, like illness and treatment. Within the extent of the patient’s abilities, identifying unhelpful thinking styles, cognitive restructuring or reframing, and/or considering alternate interpretations can be helpful for flexible thinking.

• - Behavioral experiments for B might include making predictions about how the nurse will react if she asks for an extra blanket, and then trying it out to gather evidence. There is room for creativity in creating behavioral activation plans within any patient’s individual goals, based on what is important to them and what is within their physical abilities. Predictions and subsequent experiments might include saying hello to cleaning staff and observing reactions (for core beliefs such as: I’m unlikable, others are dismissive, the world is unfriendly); trying psychosocial interventions for symptoms, such as a fan on the face for nausea or breathlessness (for core beliefs such as: I’m powerless).

• - Exposure exercises to aversive thoughts/beliefs, emotions, physical sensations, or situations. Anecdotally, many interdisciplinary team members have been keen to help with exposure exercises. For one young adult who was terrified of the radiation therapy machinery, we established a meet-n-greet with a radiation technician and gradual exposure sessions with the machinery, incrementally approaching until the patient was able to enter the machine.

Acceptance and commitment therapy (ACT)

ACT philosophy can be a good fit in the uncontrollable and unpredictable world of healthcare: Building acceptance for what is, rather than trying to change it, and living in a value-consistent way within this (Hayes et al., 2012). The conceptual model examines (in)flexibility in six key psychological areas, representing one’s ability to notice and accept experiences and approach them in a values-driven manner. Avoidance of such experiences is theorized to be the source of suffering. Areas of (in)flexibility include: Avoiding experiences rather than acceptance; getting caught in cognitions and emotions that then affect behavior and awareness (“fusion”) versus noticing these mindfully (“defusion”); focusing on the past and future versus being mindful of the present; lacking awareness of values versus value clarity; impulsive, avoidant, or inaction versus committed value-consistent actions; and finally, an instable awareness of oneself as a conscious observer (“self-as-content”) versus a stable awareness of same (“self-as-context” or “the observing self”).

Example

C was raised in a home in which everyone helped the family system. C’s chores involved household repairs, manual labor, and earning for the family outside the home. He implicitly learnt that he excelled in serving others, his value was in contributing to the system, and his individual needs were unimportant. These lessons served him well in many chapters of his life, such as developing a trade in which he could serve the needs of others and in developing relationships in which his needs could remain silent (focusing on football with friends, marrying a spouse with multiple health comorbidities).

When C’s Multiple Sclerosis first developed, it did not disrupt his function because his physical abilities remained mostly intact. However, after an attack 1.5 years ago, his physical debilitation became too great. Unable to serve others and needing his own support for increasing debilitation, C’s coping became less effective. His thoughts that he is only useful in serving others and fears of being abandoned amplified. His thoughts and fears (fusion) hijacked him from experiencing and processing his present moment experience (Self-as-content/lack of connection with present moment). He developed panic attacks. Unable to tolerate these, he hid in the garage or called an ambulance (Situational Avoidance helps Experiential Avoidance). He also tried to compensate for bad days by working extra hard on good days, preventing him from accepting his illness limitations (resisting acceptance) as well as reinforcing heightened anxiety and further panic attacks.

C’s illness has created a barrier in acting according to his known values of serving others and self-sacrifice (value inconcsistency). This keeps him stuck in the abovementioned cycle, avoiding his own experience and needs without relief (Persistent Inaction, Impulsivity, Avoidance).

ACT interventions

Using ACT, interventions might include three domains, the “ACT Triflex”:

• - Open Up: Building acceptance and defusion of his illness, his limitations, and his emotions. Defusion might focus on thoughts (useless) or emotions (fear of abandonment). Defusion can also be built around the symptoms of anxiety, creating a perspective of being an observer rather than a victim. For C, this will take a solid case conceptualization that he agrees with, and solid psychoeducation on the model and treatment plan. When this is established, C’s understanding of how his current coping reinforces his ongoing suffering may allow him to practice mindfulness and defusion exercises. Goals might need to be small and manageable, such as 1 or 2 minutes of practice per day.

• - Be Present: Building contact with the present moment and building an awareness of the self as an observer. For C, this might focus on building awareness of how his wife is responding in the present. Perhaps she is supporting him in ways that he cannot notice because he is instead focusing on fears for the future.

• - Do what matters: Connecting with one’s values and taking action in value-oriented ways. Interventions might help C expand his understanding of his values and plan value-consistent actions within additional value-areas.

Dialectical behavioural therapy (DBT)

DBT focuses on building balance between acceptance and change (Linehan, 2014). Anecdotally, it has been a very helpful orientation for dealing with heightened emotions, whether pre-existing or medically based, and to bolster emotional coping in a difficult medical situation. The Biosocial conceptualization model is a validating and normalizing approach to intense reactions, whether behavioral, emotional, or somatic. In palliative care, biological considerations of heightened emotionality might be neurological illness or mood-altering medications. Social factors include environments that are invalidating, mismatch for the person’s strengths, chaotic, or abusive. These could be historical environmental factors for patients and they could also be true in health care. For example, healthcare is fast paced with emergency situations arising regularly (chaos) while any given patient might already be dealing with threats to their lives or physical integrity. Relationships between clinicians and patients could be difficult (mismatch or abusive). These and others could be exacerbated by individual histories, including mental health concerns, poor social support, financial concerns, other experiences with illness or end-of-life. Conceptualization in DBT also emphasizes dialectics, balancing opposing perspectives that could both be true.

Example

D was diagnosed with breast cancer 20 years ago. Her treatments were working to maintain quality of life until 6 months ago. She was admitted to palliative care for intensive symptom management. D reports multiple interpersonal difficulties with medical team members, largely involving perceived medical neglect or abandonment. Admission, difficult treatments, coping in the chaotic hospital environment, and dealing with the hospital staff/system may exacerbate difficulties coping with this admission.

Historically, D experienced multiple physical illnesses from birth, increasing what she needed from her mother (biological predisposition, chaotic environment). There was a mismatch between the emotional support that D needed and the practical support that her family was able to provide. They responded in ways that D felt invalidated, often receiving messages that she was “too emotional” (invalidating and/or abusive environment). Her familial relationships remain an unfulfilling source of support for her. All relationships have remained difficult, which forced her out of the workforce 5 years earlier.

D learnt that others will neglect her needs and now she is dealing with her own mortality, heightening her existential fears. She is skeptical of other people’s efforts and intentions; she is hypervigilant for cues that she is being dismissed. In her cancer care, this is manifesting as micromanaging her care and persistent information seeking. She is emailing her medical providers multiple times per week to follow-up on every item previously discussed. These emails are often sent within days of previous meetings or conversations, allowing little time for providers to follow-through. She also has long lists of questions for her providers, sometimes extending meetings for up to an hour past scheduled time. These pursue behaviors soothe her fears in the short term although in the long term, she remains terrified of medical neglect or abandonment. When she does not receive responses, she perceives validation of her fears and reacts with unregulated anger. She then feels excessively and persistently sad that she will die due to medical incompetence and lack of accountability. This drains her energy and she withdraws. However then the fatigue incites fears of cancer progression, reigniting this cycle and causing her to resume pursuing medical providers. These behaviors are also straining her team’s patience with her, leading to fewer responses over time, further exacerbating the cycle.

DBT interventions

• - Dialectics—Helping this patient find a middle path. With D, this included validating the cues she was collecting (often through hypervigilance) and other possibilities that could exist at the same time, such as “My physician cannot answer that question and can still provide good care.”

• - Behavior and solution analysis could help D understand the roots of current difficulties and create plans to attenuate additional suffering while admitted. We were able to investigate her aggressive behavior toward staff and identify that anger gives her energy and motivation versus her fatigue and anhedonia; it helps her reach goals. We also identified that she later feels more fatigued and ashamed, so this strategy might help in the short term and exacerbate difficulties in the long term.

• - Mindfulness skills for experiencing the present, improving emotion regulation, behavioral control, symptom management, and engaging in life could help keep D grounded in the present rather than hyperfixating on fears for the future.

• - Distress Tolerance skills for withstanding the chaotic, unpredictable, and fast-paced world of the inpatient environment. D chose one skill to practice per day, seeking multiple opportunities throughout that day.

• - Emotion Regulation skills for managing difficult emotions as they arise. These can also be helpful for managing somatic experiences such as pain or nausea.

• - Interpersonal Effectiveness skills could provide D with language to express herself and advocate as needed. These DBT skills are succinct and direct. They can also be helpful in addressing conflict in current relationships, because when facing mortality, priorities shift and people move toward healing with others. With D, we practiced these over a few sessions before admission.

Mindfulness-based interventions

Although not conceptualization-based, there is a large body of work on the effects of Mindfulness-based interventions (Carlson, 2017). Mindfulness interventions have been adapted for patients with heterogenous cancers and can improve quality of life, physical symptoms (pain and nausea), sleep, fatigue, cognitive, and emotional/psychological symptoms and biomarkers of illness (Mehta et al., 2019; Shennan et al., 2011). Consider the benefits of integrating mindfulness into a treatment plan once your conceptualization is developed.

Additional tips

Consider health care as a culture in itself: It has its own hierarchies, mores, languages, norms. Patients enter the system with their own ways of interacting in society that may not work. The coping tools they use in daily life (kindness, aggression, paying for better services, asking for clarification, escalating complaints) may fail them in this system. This of course will vary across cultures, given social norms and healthcare systems. Patients may relate to the comparison of navigating healthcare being like navigating in a foreign country.

If working with health populations at any stage of illness, I would strongly recommend competence in trauma. Become aware of the signs of trauma responses in the therapy room (a good resources is Rothschild, 2000) and learn to address with somatic skills. When in extreme autonomic arousal, clients will not have working memory capacity to respond to cognitive interventions (Arnsten et al., 2015).

Intervention in dynamics with team members

An area of intervention that psychologists can offer is supporting our colleagues in difficult or confusing interactions with patients and/or families. We can make ourselves available by attending rounds, being available for consult, providing summaries of our findings when consulting. I have found team members interested to hear our (abridged) conceptualizations. We can conceptualize about process to guide our colleagues in what may have been barriers or difficulties in the room. We may also be able to join colleagues in their meetings with patients to observe the process, firsthand. We may then provide feedback to colleagues individually or perhaps even offer intervention within the room with all parties present.

Potential challenges

Roles or territorial disputes are not unique to palliative care and historical lack of presence in this domain of care might influence difficulties in integration. Group discussions that include different psychosocial disciplines and management can help carve out roles, building or maintaining a team-oriented perspective despite tensions (O’Connor et al., 2006; Rosen et al., 2018). Part of our role working on such teams may include teaching how we can collaborate within and contribute to the existing services. We may need to lead conversations on these tensions, naming them openly and helping team members reflect on the threats and benefits. We can help distinguish referral pathways for shared activities, such as diagnosis or capacity assessment.

Goals are complicated, referral questions from interdisciplinary colleagues (“Please teach distraction,” “Anxiety,” “Depression,”) do not always match the patient’s concerns (isolation, fearful, sense of failing). As well, there are often support people present, who may have their own perspectives (“The patient is withdrawing, [. . .] not trying hard enough, [. . .] not acting like themselves”). Case conceptualization skills may be helpful to bring together different perspectives and direct intervention, which may be individual, couples, or group format.

Finally, a challenge may be the “grain of truth” (Levin and Applebaum, 2014) inherent in advanced illness, which differs from fears in a mental health setting. For example, fears of dying or losing one’s mind might be considered irrational fears for someone with a panic disorder; these may be veritable threats for patients with advanced illness. They may have already occurred in one’s course of illness (e.g. cardiac events requiring resuscitation, delirium), which may heighten fears and perhaps create resistance to intervention. Validation of the grain of truth is important in conceptualizing and intervening.

An area of struggle may be our own difficulties with illness, death, or dying. This may take some practice. Attend rounds on related units, read about existential topics, talk to others who have existential experience. Practice exposure to the uncomfortable elements. Stay aware of the process in the room; return to this and the case conceptualization when feeling overwhelmed or ineffective. Our job is not to fix, we walk alongside patients on their own journey. Psychologists are a source of support who can listen deeply in this highly medicalized time of life. When unsure, listen harder. Maintain humility as you walk alongside your patient’s journey toward death.

Additional resources

• - Kasl-Godley et al. (2014);

• - Chapters 61–64 in Breitbart et al. (2021),

• - The de Souza Institute’s online learning modules (de Souza Institute, 2023);

• - The American Psychological Association’s resources on end-of-life care (American Psychological Association, 2023a);

• - The International Psycho-Oncology Society (2023) webcasts,

• - Canadian Virtual Hospice (n.d).

F and G were a pleasant couple in their early-60s. They had “lived alongside” F’s cancer for 12 years, which they described as a nuisance but not a barrier on quality of life. It eventually spread to F’s spine where it began to gradually but consistently limit their mobility and cause excruciating pain. They required an on-and-off admissions to our unit for most of the year that followed. They had intermittent discharges from hospital when they achieved a level of pain and function that allowed them to live at home, unfortunately only briefly each time. I walked alongside this couple as they navigated this difficult chapter in their lives together. After F died, G stated that caring for F in the final year of life was the most difficult and the most rewarding chapter in their story. This rung true for me as well, because working alongside death was some of the hardest and also the most rewarding work I have done as a psychologist.