It's More Difficult..'

Clinicians' Experience Providing Palliative Care to Adolescents and Young Adults Diagnosed With Advanced Cancer

Jonathan Avery, PhD; Arielle Geist; Norma Mammone D'Agostino, PhD; Sarah K. Kawaguchi, MD; Ramona Mahtani, MD; Paolo Mazzotta, MD, MSc; Pamela J. Mosher, MD, MDiv; Ahmed al-Awamer, MBBS, MHSc; Alisha Kassam, MD, MPH; Camilla Zimmermann, MD, PhD; Mahsa Samadi, MD; Seline Tam; Amirrtha Srikanthan, MD, MHSc; Abha Gupta, MD, MSc

Disclosures

J Oncol Pract. 2020;16(1):e100-e108. 

In This Article

Results

Demographics

The final sample consisted of 19 HCPs (9 men and 10 women), of whom 6 were palliative physicians (6 of 19, 31%; Table 2). Each HCP participated in a single one-on-one interview. Participants identified ≥ 1 primary disease site central to their clinical practice. Disease sites included breast, prostate, colon, lung, sarcoma, gynecological (ovarian, cervical), genitourinary, GI, head and neck, melanoma, and cancer of the CNS. The median age of participants was 45 years (range, 24–67 years). Most participants were married or lived with a life partner (13 of 19, 68.4%). Six (31.5%) identified being parents to children at the time of the study who were within the AYA age range. Just over half of all participants (10 of 19, 52.6%) had ≥ 11 years of experience working in clinical areas that treat AYAs diagnosed with advanced cancer.

Findings

Overall, HCPs who participated in this study found it more difficult to provide palliative care to AYAs than to older adults. Four main themes emerged that described these difficulties: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity.

Challenges Helping AYAs/Families to Engage in and Accept Palliative Care. When participants were asked to describe their overall experience providing palliative care to AYAs, responses reflected a comparison between care provided to AYAs versus older adults. This comparison demonstrated that although there were similarities in providing care to these populations, palliative care for AYAs was seen as more challenging. Participants remarked that AYAs were less able to accept the reality of having advanced/incurable cancer, making it difficult for HCPs to approach the topic of palliative care. P1 (radiation oncologist) stated the following:

Providing palliative care for anybody can be challenging…. But with young adults, they have a completely different perspective…. It is very difficult to get them to accept the realities of the situation and to actively engage them in the necessary steps [of palliative care].

Other participants shared similar difficulties. P11 (advanced practice nurse) observed that AYAs were more willing to undergo additional treatments to maintain hope of living a normal life, because it remained inconceivable from the patient's perspective to die of cancer at a young age. P11 said:

[AYAs] really hold on to that hope for a cure even longer than older patients because they can't even fathom the fact that they would die at a younger age…it's too incomprehensible….I have a patient right now in her late 20s who has less than a 3% [chance] of getting through her treatment and she doesn't want to hear the words "palliative care."

This maintenance of hope may be perceived by HCPs as being in conflict with palliative care, because patients often associate palliative care with death and dying. P3 (medical oncologist) explained: "palliative doesn't mean end of life…but a lot of people perceive it that way…and many don't like that…." P1 (radiation oncologist) elaborated further by saying:

[P]alliative care, once you start talking about palliative care you have to bring in the notion of mortality. And the vast majority of young folks do not think about this…bringing up that whole notion is extraordinarily difficult.

As a result, participants observed more resistance when introducing and discussing palliative care with AYAs and the family. P10 (palliative care physician) said: "there is a lot of resistance and anger directed towards the team when we try to initiate discussions about switching to comfort care and transition to palliative care." This switch or transition refers to moving from curative to noncurative treatments.

In response, the term palliative care was often avoided by HCPs. P16 (palliative care physician) explained "the word [palliative] is rarely used. It is just too brutal. It is a bad expression. Most people think it refers to end of life." Similarly, P15 (palliative care physician) said the term is avoided in favor of emphasizing pain and symptom management to "ease things in because they [AYAs] decline to see palliative care because of that connotation" in the effort to help the AYAs accept the idea of palliation. Yet, not all participants avoided the term palliative, although some wondered whether they should. P2 (medical oncologist) questioned their use of the term saying:

Within the AYA population versus the non-AYA population I don't think I phrase it [palliative care] differently, and I don't know whether I should.

Participants also questioned how to approach the family considering their involvement in the care of the AYAs and their reactions to palliative care, particularly around the idea of death and dying. P7 (advance practice nurse) said:

There is a whole family that you really have to consider…. And we think "how are they going to manage this [the possibility of death and dying]?"… I don't know what the right thing is to do.

Thus, conversations about palliative care were difficult to approach. There was hesitancy and uncertainty around how to help AYAs accept palliative care, given its connection with death and dying.

Uncertainty Regarding how to Involve the Family. Family involvement in the care of the AYA was also an added difficulty for HCPs. P13, a palliative care physician, noted how they often saw parents imposing their own viewpoints onto their AYA children, even when these AYAs were capable of making decisions for themselves. This type of paternalism brought an increased perceived sense of conflict within the family unit by HCPs, making it more difficult for participants to approach topics associated with palliative care with their AYA patients and, by extension, the family. P13 said:

I think the relationship between parent and child is unique. There is this special bond that makes initiating these [palliative] conversations more difficult.

When asked to expand on this difficulty, P13 provided an example that illustrates this conflict.

There was a woman we cared for who was in her 30s. She lived with a roommate. I don't think she was very close with her family before she became ill, but then came to rely on her family because of the functional decline related to her illness. And it was hard because she felt differently than her family…. She is capable, and would express different decisions than her family but then would defer to her family. So we talked about this idea of decision making as a family unit. Her family was very involved. That involvement is more prominent when we think about younger people.

This statement emphasizes how the involvement of the family made it more challenging for the AYA to remain autonomous and to make decisions for themselves as their health worsened. The AYA was forced to rely on their family because of their functional decline, which resulted in a loss of autonomy even though they were still capable of making decisions. Even so, the AYA relied on their family to make decisions, even when the family's views conflicted with the preferences of the AYA. This participant went to extra lengths to discuss decision making within the family unit to ensure the needs of the AYA were being met. The involvement of the family in this case added a layer of complexity to the care provided.

P8, a medical oncologist, also expressed similar difficulties with the involvement of the family in the care of the AYA, particularly around the loss of being dependent.

[T]hat dependency is tough. If you are not financially independent and the decisions that the AYA makes are different than what the parents want, what happens then? What's the psychological trauma?

P8 is expressing the conflict that arises within the family unit when the health of the AYA is declining. The degree of emotion and distress surrounding the declining health of a young adult is such that the experience within the family unit can be traumatic. Within this experience, how should HCPs be involved in discussions around palliative care?

The added complexity stemming from family/parental involvement and influence created a constant struggle for participants to concede with family/parental influence even when their patients were able to consent. P17, a palliative care physician expresses this struggle, saying:

There is stronger parental involvement in their [AYA] care. I think it is a unique dynamic for patients trying to manage and the team trying to navigate those relationships and sense of tensions that exist between the family.

Many participants emphasized how this struggle to navigate the family dynamics can occur in pediatric or older populations, but it was highlighted that there is something different within the family dynamic of AYAs that adds to the complexity. For example, P6, a medical oncologist, expressed that they observe more anger within the family unit of an AYA when compared with families of older adults.

The family of the young patient is more difficult than the family of the older patient. The family of the older patient, there is more of an understanding that we don't live forever…. Parents of the young patient, they are often more angry.

As P6 explained, this type of emotional intensity was often directed at HCPs when they broached topics associated palliative care, saying

[Y]ou're the target. You're telling them something [eg, out of curative treatment options] that they don't want to hear…. So that's the big difference. I find that the families of the young patients are often more difficult.

Thus, the heightened effect among AYAs and their family members were added difficulties for HCPs when knowing how to approach them about palliative care.

HCP Sense of Tragedy. During interviews, participants noted how they described feeling a sense of loss, sadness, and shock when knowing that they were treating an individual between 15 and 39 years of age. There was a greater sense of tragedy and trauma associated with treating AYAs diagnosed with advanced cancer. This experience is illustrated by P7 (advanced practice nurse)

[I]t is so hard for everyone. It is such a shock to see someone with advanced cancer for example in their 20s. It is so hard for us to cope. We can't believe it's happening.

P10 (advanced practice nurse), P11 (palliative care physician), and P18 (palliative care physician) shared similar sentiments. "It's very traumatic…. It's really quite disappointing to see young people dying at a time when they should not be" (P10). "Sometimes there are young children involved [children of AYAs]…that makes it so much more tragic on a different level" (P11). P18 said: "When you get a referral and you see a patient in that 15–39 age range, I feel a bit more nervous and anxious. I feel sadder this is happening."

This sense of tragedy caused emotional agony for participants, bringing an increased level of difficulty and stress when providing palliative care to AYAs. P13 (palliative care physician) noted:

I think there is something extra sad to see a person who is a parent of very young children dying before their children grow up…. And that is especially hard to just sit with it and not be able to fix it.

The expressed feelings of helplessness related to not being able to fix or cure AYA disease that is evidenced by this quotation points to an additional issue, which is the sense of failure that can arise among HCPs and was described as more encompassing when caring for young adults. P12 (psychiatrist), noted: "I think the oncology community struggles because they feel that if they can't cure a young person, they've failed."

This sense of failure was linked to a feeling of frustration that a cure was not possible for such a young patient. A number of participants hinted at the possibilities of emotional burnout because of the anguish and sense of failure. P18 (palliative care physician) was clear they could only manage a limited number of AYA patients, saying: "The thing with this age group [AYA] is that I can't do too many patients on my caseload because I think I'd lose my mind. I find it too intense."

Along with these emotions, participants hinted at difficulty referring AYAs to palliative care early enough, which leads to referrals closer to end of life. P8 (medical oncologist) explains that from their experience "most of it [palliative care for AYAs] is happening at the bitter end…it just seems so unnatural for it to happen earlier." P13 (palliative care physician) elaborated further by saying:

We tend to think that younger people do better with aggressive intervention…. But that may just be justification because it is uncomfortable to be facing end of life with such a young person.

Overall, this sense of tragedy caused greater difficulty for HCPs providing palliative care to the AYA diagnosed with advanced cancer. This at times leads to referrals closer to end of life.

HCP Sense of Emotional Proximity. It became apparent that participants experienced a different sense of identification with or connection to AYAs than with other populations. Treating AYAs caused participants to reflect on their own experiences as a young adult or as a parent of a young adult. This reflection created a greater sense of connection or relatability between participants and their patients. For example, P6 (medical oncologist) drew parallels between AYA patients and their own children, saying:

I have [children] and they're in the AYA age group. It's not unusual to have a conversation about dying to someone who might actually be your kids…there is an aspect of this that hits close to home.

This choice of words is an illustration of the sense of relatedness or emotional proximity. This proximity expressed by P6 was also noted by P7 (advanced practice nurse) and P17 (palliative care physician).

It hits harder…. I remember being the same age…. So you identify more with them… (P7)
[I]t [treating an AYA patient with advanced cancer] immediately creates a different dynamic. It's one of those moments that sticks with you…it's always a little bit of a punch in the face. And even as I get older, I can still totally relate to having been through that stage of life… (P17)

Emerging from these statements was a sense of relatedness that increased the burden of care for HCPs. P17's use of visceral-type language (a punch in the face) highlights the increased intensity and enduring emotional impact of caring for AYAs with advanced cancer. Many other participants expressed the same type of emotional proximity. P5 (advanced practice nurse) said:

Working with young adults I find quite distressing. They are within my age category…. You can relate to them…

P16 (palliative care physician) noted: "I'll have a young female [patient] with cancer…and I will look at her birthday, it's a month away from [one of my kids]. It kind of hits you hard." P19 (psychiatrist) said:

I saw someone who was going into an advanced degree and I was thinking about my own experience with that trajectory and what it would be like [with advanced cancer]. So there is a lot of sadness.

These quotations underscore how participants drew similarities between their own experiences as young adults (or parent of a young adult) while treating AYAs with advanced cancer. This type of proximity amplified the emotional duress they already felt when providing palliative care to this population.

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