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<front>
<journal-meta>
<journal-id journal-id-type="publisher-id">Front. Med.</journal-id>
<journal-title>Frontiers in Medicine</journal-title>
<abbrev-journal-title abbrev-type="pubmed">Front. Med.</abbrev-journal-title>
<issn pub-type="epub">2296-858X</issn>
<publisher>
<publisher-name>Frontiers Media S.A.</publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id pub-id-type="doi">10.3389/fmed.2023.1220370</article-id>
<article-categories>
<subj-group subj-group-type="heading">
<subject>Medicine</subject>
<subj-group>
<subject>Opinion</subject>
</subj-group>
</subj-group>
</article-categories>
<title-group>
<article-title>When to initiate early palliative care? Challenges faced by healthcare providers</article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author" corresp="yes">
<name><surname>Vitorino</surname> <given-names>Joel Vieira</given-names></name>
<xref ref-type="aff" rid="aff1"><sup>1</sup></xref>
<xref ref-type="aff" rid="aff2"><sup>2</sup></xref>
<xref ref-type="corresp" rid="c001"><sup>&#x0002A;</sup></xref>
<uri xlink:href="http://loop.frontiersin.org/people/2405709/overview"/>
</contrib>
<contrib contrib-type="author">
<name><surname>Duarte</surname> <given-names>Beatriz Veiga</given-names></name>
<xref ref-type="aff" rid="aff2"><sup>2</sup></xref>
<uri xlink:href="http://loop.frontiersin.org/people/2516170/overview"/>
</contrib>
<contrib contrib-type="author" corresp="yes">
<name><surname>Laranjeira</surname> <given-names>Carlos</given-names></name>
<xref ref-type="aff" rid="aff1"><sup>1</sup></xref>
<xref ref-type="aff" rid="aff3"><sup>3</sup></xref>
<xref ref-type="aff" rid="aff4"><sup>4</sup></xref>
<xref ref-type="corresp" rid="c002"><sup>&#x0002A;</sup></xref>
<uri xlink:href="http://loop.frontiersin.org/people/1454096/overview"/>
</contrib>
</contrib-group>
<aff id="aff1"><sup>1</sup><institution>School of Health Sciences, Polytechnic of Leiria, Morro do Lena, Alto do Vieiro</institution>, <addr-line>Leiria</addr-line>, <country>Portugal</country></aff>
<aff id="aff2"><sup>2</sup><institution>Palliative Care Unit, Portuguese Institute of Oncology of Coimbra</institution>, <addr-line>Coimbra</addr-line>, <country>Portugal</country></aff>
<aff id="aff3"><sup>3</sup><institution>Centre for Innovative Care and Health Technology (ciTechCare), Polytechnic of Leiria</institution>, <addr-line>Leiria</addr-line>, <country>Portugal</country></aff>
<aff id="aff4"><sup>4</sup><institution>Comprehensive Health Research Centre (CHRC), University of &#x000C9;vora</institution>, <addr-line>&#x000C9;vora</addr-line>, <country>Portugal</country></aff>
<author-notes>
<fn fn-type="edited-by"><p>Edited by: Jeremy M. Jacobs, Hadassah Medical Center, Israel</p></fn>
<fn fn-type="edited-by"><p>Reviewed by: Wojciech Leppert, Poznan University of Medical Sciences, Poland</p></fn>
<corresp id="c001">&#x0002A;Correspondence: Joel Vieira Vitorino <email>joelvieiravitorino&#x00040;gmail.com</email></corresp>
<corresp id="c002">Carlos Laranjeira <email>carlos.laranjeira&#x00040;ipleiria.pt</email></corresp>
</author-notes>
<pub-date pub-type="epub">
<day>02</day>
<month>10</month>
<year>2023</year>
</pub-date>
<pub-date pub-type="collection">
<year>2023</year>
</pub-date>
<volume>10</volume>
<elocation-id>1220370</elocation-id>
<history>
<date date-type="received">
<day>10</day>
<month>05</month>
<year>2023</year>
</date>
<date date-type="accepted">
<day>13</day>
<month>09</month>
<year>2023</year>
</date>
</history>
<permissions>
<copyright-statement>Copyright &#x000A9; 2023 Vitorino, Duarte and Laranjeira.</copyright-statement>
<copyright-year>2023</copyright-year>
<copyright-holder>Vitorino, Duarte and Laranjeira</copyright-holder>
<license xlink:href="http://creativecommons.org/licenses/by/4.0/"><p>This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.</p></license></permissions> 
<kwd-group>
<kwd>palliative care</kwd>
<kwd>healthcare providers</kwd>
<kwd>assessment</kwd>
<kwd>patient-centered care</kwd>
<kwd>referral</kwd>
<kwd>resources</kwd>
<kwd>education</kwd>
<kwd>communication</kwd>
</kwd-group>
<contract-num rid="cn001">This work is funded by national funds through FCT &#x02014; Funda&#x000E7;&#x000E3;o para a Ci&#x000EA;ncia e a Tecnologia, I.P. (UIDB/05704/2020 and UIDP/05704/2020) and under the Scientific Employment Stimulus&#x02014;Institutional Call &#x02014; [CEECINST/00051/2018].</contract-num>
<contract-sponsor id="cn001">Funda&#x000E7;&#x000E3;o para a Ci&#x000EA;ncia e a Tecnologia<named-content content-type="fundref-id">10.13039/501100001871</named-content></contract-sponsor>
<counts>
<fig-count count="0"/>
<table-count count="1"/>
<equation-count count="0"/>
<ref-count count="52"/>
<page-count count="5"/>
<word-count count="4068"/>
</counts>
<custom-meta-wrap>
<custom-meta>
<meta-name>section-at-acceptance</meta-name>
<meta-value>Geriatric Medicine</meta-value>
</custom-meta>
</custom-meta-wrap>
</article-meta>
</front>
<body>
<sec sec-type="intro" id="s1">
<title>Introduction</title>
<p>Palliative Care (PC) can begin when a serious illness is diagnosed and continue during the entire continuum of care (<xref ref-type="bibr" rid="B1">1</xref>). According to the World Health Organization, PC &#x0201C;is a crucial part of integrated, people-centered health services. Relieving serious health-related suffering, be it physical, psychological, social, or spiritual, is a global ethical responsibility. Thus, whether the cause of suffering is cardiovascular disease, cancer, major organ failure, drug-resistant tuberculosis, severe burns, end-stage chronic illness, acute trauma, extreme birth prematurity, or extreme frailty of old age, palliative care may be needed and has to be available at all levels of care&#x0201D; [(<xref ref-type="bibr" rid="B2">2</xref>); p. 1].</p>
<p>Of the 234 nations in the globe, roughly 136 offer PC services and resources. While Europe, Australia, Canada, and the United States have the highest levels of PC integration, many regions of Africa and several regions of Asia and South America lack basic amenities (<xref ref-type="bibr" rid="B3">3</xref>). There are several aspects that contribute to the development of PC integration in health care systems: economic resources, cultural and religious aspects, education and training of health care teams (<xref ref-type="bibr" rid="B3">3</xref>&#x02013;<xref ref-type="bibr" rid="B5">5</xref>).</p>
<p>The available evidence indicates an increasing need for PC (<xref ref-type="bibr" rid="B6">6</xref>&#x02013;<xref ref-type="bibr" rid="B8">8</xref>). This represents a challenge in the definition of health policies (<xref ref-type="bibr" rid="B9">9</xref>&#x02013;<xref ref-type="bibr" rid="B11">11</xref>), in the organization of health services and responses (<xref ref-type="bibr" rid="B12">12</xref>, <xref ref-type="bibr" rid="B13">13</xref>), but also for health professionals (<xref ref-type="bibr" rid="B11">11</xref>, <xref ref-type="bibr" rid="B14">14</xref>).</p>
<p>Recently, the COVID-19 pandemic resulted in many critically ill and dying patients requiring expert management of symptoms &#x0201C;such as dyspnea, pain, and delirium, as well as serious illness communication, including conversations about care goals and end-of-life issues&#x0201D; [(<xref ref-type="bibr" rid="B15">15</xref>); p. e22]. Given the increasing uncertainty of the disease&#x00027;s trajectory, high-quality PC must be offered and affordable for all people. However, COVID-19 did complicate matters. When patients deteriorated rapidly, time was of the essence, health workers were overburdened, seclusion was mandatory, and relatives were instructed not to touch or even be in the same room as loved ones (<xref ref-type="bibr" rid="B16">16</xref>). The pandemic is therefore considered to have significantly increased emerging PC needs. Likewise, the pandemic slowed and, in some instances, reversed advancements made in PC development (<xref ref-type="bibr" rid="B17">17</xref>, <xref ref-type="bibr" rid="B18">18</xref>).</p>
<p>The literature has supported the idea that early referral to PC translates into increased quality of life (<xref ref-type="bibr" rid="B19">19</xref>, <xref ref-type="bibr" rid="B20">20</xref>). Therefore, identifying the appropriate time to initiate the palliative approach to the patient is a challenge for formal as well as informal caregivers.</p>
<p>We aim to identify areas of assessment, auxiliary tools, as well as possible paradigm shifts toward a socio-ecological approach to the person with palliative needs, in order to provide differentiated PC adjusted to the person&#x00027;s condition as early as possible.</p></sec>
<sec id="s2">
<title>Benefits and implications of early palliative care</title>
<p>Several studies report that few people receive PC in their last year of life (<xref ref-type="bibr" rid="B21">21</xref>&#x02013;<xref ref-type="bibr" rid="B23">23</xref>). However, earlier PC has been shown to improve quality of life and survival (<xref ref-type="bibr" rid="B20">20</xref>, <xref ref-type="bibr" rid="B22">22</xref>, <xref ref-type="bibr" rid="B24">24</xref>, <xref ref-type="bibr" rid="B25">25</xref>). PC has several benefits, including improved quality of life and mood (<xref ref-type="bibr" rid="B25">25</xref>), decreased need for therapy at the end of life, and decreased healthcare costs (<xref ref-type="bibr" rid="B26">26</xref>). According to Mittmann et al. (<xref ref-type="bibr" rid="B22">22</xref>), early identification leads to an increase in access to PC services.</p>
<p>Timely PC is a systematic approach that identifies patients with high supportive care requirements and refers them to specialized PC as soon as possible based on defined referral criteria. According to Hui et al. (<xref ref-type="bibr" rid="B27">27</xref>), it needs four elements: routine assessment of patients&#x00027; needs for supportive care; institution-specific consensual referral criteria; a system to initiate referrals when patients meet requirements; and availability of outpatient PC resources to provide individualized and timely patient-centered care, with the goal of improving patient and caregiver outcomes. That at least some aspects of PC begin earlier, while the patient is still able to communicate effectively and participate as fully as possible in their medical treatment, is crucial to patient-centered care (<xref ref-type="bibr" rid="B28">28</xref>). This may also minimize the burden of replacing decision-making by the patient&#x00027;s family or caregiver, thereby decreasing recurrent distress emotions and avoiding more complicated grieving in the future (<xref ref-type="bibr" rid="B28">28</xref>).</p>
<p>To provide effective and efficient patient-centered care at the palliative stage, we must attend to the complexity of care and the areas of specialized interventions (<xref ref-type="bibr" rid="B29">29</xref>), by clearly defining the core competencies of the multidisciplinary health team members, and prioritizing a holistic and interactive approach (<xref ref-type="bibr" rid="B30">30</xref>). Involvement of care teams reduces hospitalization rates for PC patients and enables them to spend more time at home (<xref ref-type="bibr" rid="B30">30</xref>), honoring patients&#x00027; wish to be cared for at home (<xref ref-type="bibr" rid="B31">31</xref>).</p>
<p>When contemplating the start of PC, it is crucial to differentiate between the use of a palliative strategy to treatment (primary PC) and referral to specialist PC consulting services. Primary PC is appropriate at all stages of illness and can be delivered by any healthcare provider (<xref ref-type="bibr" rid="B21">21</xref>, <xref ref-type="bibr" rid="B28">28</xref>). This palliative approach to care may be included in the care of every patient following diagnosis, as part of a personalized treatment plan. It provides patients, their relatives, and carers greater control, while also improving quality of life and wellbeing. It may include emotional, social, and spiritual components of care, in addition to physical components of care. Healthcare providers may collaborate with patients and their families to respect them as persons and honor their healthcare treatment choices by aligning care with the patient&#x00027;s goals and principles of PC (<xref ref-type="bibr" rid="B1">1</xref>, <xref ref-type="bibr" rid="B28">28</xref>). In contrast, specialized consultation by a PC professional where the major focus of the consultation is comprehensive therapy, including advanced symptom management, psychological, social, and spiritual support, and dignity-preserving care. Specialist PC services are often required when symptoms&#x02014;whether physical, psychological, or multifactorial&#x02014;are refractory or difficult, and frequently include interdisciplinary therapy with the goal of fostering quality of life and preserving meaning in existence (<xref ref-type="bibr" rid="B28">28</xref>).</p>
<p>There is an urgent need to ensure quality and equality of treatment for all PC patients, from those who require a PC approach to those who require expert intense PC (<xref ref-type="bibr" rid="B29">29</xref>). Attention need be given to the areas of care requiring evaluation, the strategies to be implemented, the evaluation instruments that can be used, and the consequences resulting from this approach.</p>
<p>Current health-care models frequently rely on referral-based PC, which can lead to uneven access to treatments or patients receiving PC near the end of their illness progression (<xref ref-type="bibr" rid="B32">32</xref>). Early PC has been identified as one option for extending access to PC services for patients suffering from illnesses with an unpredictable course, such as organ failure (<xref ref-type="bibr" rid="B33">33</xref>). Early PC is a proactive technique for developing treatment goals, controlling symptoms, and improving quality of life in patients with any life-limiting chronic condition, thereby expanding the scope of traditional PC services (<xref ref-type="bibr" rid="B34">34</xref>). Clearly defining the early PC approach so that health professionals and patients understand what early PC is and what role it can play, as well as its potential benefits, could assist in overcoming patient- and family-related barriers rooted in the traditional portrayal of PC. Barriers include misinformation, reluctance to accept referral, or the belief that PC is synonymous with terminal care. Similarly, physicians are concerned that referring patients to PC may cause patients and their families to lose hope and experience suffering (<xref ref-type="bibr" rid="B35">35</xref>). Teaching physicians how to deliver &#x0201C;bad news&#x0201D; may aid in their ability to deal with the emotional concerns associated with sending patients to specialist PC (<xref ref-type="bibr" rid="B35">35</xref>).</p>
<p>Tuca et al. (<xref ref-type="bibr" rid="B36">36</xref>) propose an early PC model that includes a multidimensional assessment, allowing clinicians to classify patients as having low, medium, or high palliative complexity, based on the requirement for basic or specialist PC: &#x0201C;(a) Low complexity&#x02014;capacity and training of a non-specialized PC team is sufficient; referral to a specialized team is not indicated; (b) Medium complexity&#x02014;care requires more than capacity and training of a non-specialized PC team; a shared care with a specialized PC team is indicated; (c) High complexity&#x02014;care entails far more than capacity and training of a non-specialized PC team; intensive shared care with specialized PC is required&#x0201D; (p. 242).</p>
<p>PC complexity is defined &#x0201C;as a clinical condition based on the interaction of emerging clinical characteristics according to a multidimensional evaluation, which confers a special tendency to clinical instability, uncertainty in the outcome of health care intervention, and the subsequent need to intensify specialized palliative support measures&#x0201D; [(<xref ref-type="bibr" rid="B36">36</xref>); p. 242].</p>
<p>The measurement of days for referral to specialist PC does not always imply that the team is not providing enough care based on the patient&#x00027;s needs (<xref ref-type="bibr" rid="B37">37</xref>). The number of persistent symptoms noted in each patient is a significant signal that specialized treatment may be required, since PC professionals may have better expertise treating refractory and chronic symptoms (<xref ref-type="bibr" rid="B37">37</xref>).</p>
<p>Support for a PC team, on the other hand, is often delayed or occurs when there is an excess of symptoms and functional dependency. The use of tools can be critical in the early identification of patients with palliative requirements, and they should ideally be accurate, dependable, low-cost, and smoothly integrated into the current workflow (<xref ref-type="bibr" rid="B38">38</xref>). Their usage may assist in indicating the appropriate palliative strategy and understanding the demands of the patient with advanced chronic illness. As demonstrated in <xref ref-type="table" rid="T1">Table 1</xref>, there is a series of instruments that guide the palliative approach via the assessment of prognosis and/or palliative requirements.</p>
<table-wrap position="float" id="T1">
<label>Table 1</label>
<caption><p>Measurement tools used to assess palliative care needs of patients.</p></caption> 
<table frame="box" rules="all">
<thead>
<tr style="background-color:#919497;color:#ffffff">
<th valign="top" align="left"><bold>Tool/instrument</bold></th>
<th valign="top" align="left"><bold>Purpose</bold></th>
</tr>
</thead>
<tbody>
<tr>
<td valign="top" align="left">Palliative necessities CCOMS-ICO (NECPAL)</td>
<td valign="top" align="left">Identify patients with advanced chronic disease who require palliative care, namely in general health services (<xref ref-type="bibr" rid="B39">39</xref>)</td>
</tr> <tr>
<td valign="top" align="left">Supportive and palliative care indicators tool (SPICT)</td>
<td valign="top" align="left">Identify people in a situation of serious and irreversible disease. Allows assessment of the need for palliative care and its planning (<xref ref-type="bibr" rid="B40">40</xref>)</td>
</tr> <tr>
<td valign="top" align="left">Diagnostic instrument of complexity in palliative care (IDC-Pal)</td>
<td valign="top" align="left">Diagnose and stratify complexity in patients who have palliative care needs (<xref ref-type="bibr" rid="B41">41</xref>)</td>
</tr> <tr>
<td valign="top" align="left">Karnofsky performance status scale</td>
<td valign="top" align="left">Assess the functional status of cancer patients to determine the type of treatment (<xref ref-type="bibr" rid="B42">42</xref>)</td>
</tr> <tr>
<td valign="top" align="left">ESAS&#x02014;Edmonton symptom assessment scale</td>
<td valign="top" align="left">Rates symptom severity and monitor their evolution in patients seen by palliative care in different care settings (<xref ref-type="bibr" rid="B43">43</xref>)</td>
</tr> <tr>
<td valign="top" align="left">PPS&#x02014;Palliative performance scale</td>
<td valign="top" align="left">Establish prognosis by assessing functional status (not the disease in question). Applicable in any disease situation (<xref ref-type="bibr" rid="B44">44</xref>)</td>
</tr> <tr>
<td valign="top" align="left">Gold standards framework prognostic indicator guidance (GSF-PIG)</td>
<td valign="top" align="left">Support early recognition of patients approaching the end of life and promote person-centered care (<xref ref-type="bibr" rid="B45">45</xref>)</td>
</tr> <tr>
<td valign="top" align="left">Integrated palliative care outcome scale (IPOS)</td>
<td valign="top" align="left">Brief tool for global measurement of perceptions and holistic assessment of the symptoms and other concerns the patient might have (<xref ref-type="bibr" rid="B46">46</xref>)</td>
</tr> <tr>
<td valign="top" align="left">&#x0201C;Surprise question&#x0201D; (SQ1 - Would you be surprised if this patient died within the next 12 months?)</td>
<td valign="top" align="left" rowspan="3">The original purpose of SQ1 is to identify high-risk patients who might benefit from palliative care services (<xref ref-type="bibr" rid="B47">47</xref>). If SQ1 is answered with &#x0201C;no&#x0201D; an additional question (SQ2) should be asked in order to more accurately predict deterioration and death (<xref ref-type="bibr" rid="B48">48</xref>, <xref ref-type="bibr" rid="B49">49</xref>)</td>
</tr>
 <tr>
<td valign="top" align="left">&#x0201C;Double Surprise question&#x0201D; (SQ2&#x02014;Would I be surprised if this patient is still alive after 12 months?)</td>
<td/>
</tr> <tr>
<td valign="top" align="left">Holistic common assessment</td>
<td valign="top" align="left">Assess patient needs in palliative care, including aspects like cultural background, mental ability, preferences and priorities (<xref ref-type="bibr" rid="B50">50</xref>)</td>
</tr></tbody>
</table>
</table-wrap>
<p>Despite efforts, there is still no consensus on when the palliative trajectory begins, and early integration of PC in clinical practice is still dependent on overcoming the numerous barriers associated with the disease, health professionals, and service organization (<xref ref-type="bibr" rid="B37">37</xref>).</p></sec>
<sec id="s3">
<title>Integrative approach: final remarks</title>
<p>Referral to PC tends to consider clinical aspects, such as the benefit of therapeutic intervention, as a dichotomous alternative to palliative intervention, considering them differentiated, separate approaches rather than attempting their integration in a holistic and complementary way.</p>
<p>Scientific knowledge suggests one should consider the palliative approach in an integrated manner, as a multidimensional and interdisciplinary intervention that views the person holistically. The fragmentation of health by professional area or by isolated clinical gain limits the potential for interventions addressing ecological and social aspects of health. Socio-ecological models have been used to contextualize the effect of many environmental variables on vulnerable people&#x00027;s lives. The person is at the heart of and immersed in a variety of environmental systems, ranging from proximate settings like the family to bigger contexts like culture (<xref ref-type="bibr" rid="B51">51</xref>). While PC has long acknowledged physical, psychological, social, and spiritual comprehensive worlds, we must go further. To comprehensively and effectively investigate and answer patients&#x00027; requests, we must consider &#x0201C;pre-existing and cumulative complexity, the dynamic aspects of complexity, invisible complexity, service/system-level difficulties, and societal repercussions&#x0201D; [(<xref ref-type="bibr" rid="B52">52</xref>); p. 1078].</p>
<p>Illness as a condition of vulnerability, and therefore attending to a patient&#x00027;s specific needs, based on a client-centered care perspective, including all their dimensions (physical, psychosocial, and spiritual) is an ethical and moral imperative of health professionals. Thus, more than defining a chronological time to begin the palliative approach, it is important to consider the individual&#x00027;s time in meeting their real needs, incorporating PC in the practice of professionals, resorting to the expertise of differentiated professionals whenever they can contribute to the person&#x00027;s fulfillment in each moment of their experience of the processes of illness.</p></sec>
<sec sec-type="author-contributions" id="s4">
<title>Author contributions</title>
<p>All authors listed have made a substantial, direct, and intellectual contribution to the work and approved it for publication.</p></sec>
</body>
<back>
<sec sec-type="funding-information" id="s5">
<title>Funding</title>
<p>This work was funded by national funds through FCT&#x02014;Funda&#x000E7;&#x000E3;o para a Ci&#x000EA;ncia e a Tecnologia, I.P. (UIDB/05704/2020 and UIDP/05704/2020) and under the Scientific Employment Stimulus&#x02014;Institutional Call&#x02014;[CEECINST/00051/2018].</p>
</sec>
<sec sec-type="COI-statement" id="conf1">
<title>Conflict of interest</title>
<p>The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.</p>
</sec>
<sec sec-type="disclaimer" id="s6">
<title>Publisher&#x00027;s note</title>
<p>All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.</p>
</sec>
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