Show Summary Details
Page of

Advance Care Planning 

Advance Care Planning
Chapter:
Advance Care Planning
Author(s):

Jeanine Blackford

and Annette F. Street

DOI:
10.1093/med/9780190201708.003.0035
Page of

PRINTED FROM OXFORD MEDICINE ONLINE (www.oxfordmedicine.com). © Oxford University Press, 2016. All Rights Reserved. Under the terms of the licence agreement, an individual user may print out a PDF of a single chapter of a title in Oxford Medicine Online for personal use (for details see Privacy Policy and Legal Notice).

date: 23 March 2019

Introduction

Conversations about end-of-life planning are increasing in complexity and scope. Advance care planning (ACP) is a process that has developed internationally to facilitate communication between individuals and healthcare providers to identify and document medical and personal care preferences consistent with personal values in the event that a patient becomes too ill in the future to express his or her wishes.1 In this process, patients also identify a person (or persons) whom they trust to insure that their healthcare wishes are respected should they lose decision-making capacity. The ACP conversation is designed to address two key questions:2

  1. 1. If you are unable or do not want to take part in your healthcare decision-making, what do we need to think about when making decisions about your care?

  2. 2. If you are unable or do not want to take part in your healthcare decision-making, to whom should we speak?

Based on the ethical principle of patient autonomy and the legal doctrine of patient consent, ACP helps to insure that the concept of consent is respected if a person becomes incapable of participating in his or her treatment decisions. It allows a commitment to person-centered care, where personal values can be respected.

These conversations occur in a context where medical technology advances have given healthcare providers the ability to prolong life by artificial and mechanical means. These advances have created their own ethical dilemmas that need careful consideration, especially when treatments may be of limited benefit to the patient. People may live longer but with increasing disabilities or comorbidities. Aside from lengthening the illness trajectory, these technological advances have also increased palliative care options. The boundaries between active medical management for cure and palliative care for symptom control are now blurred, and patients are offered more choices, some of which may be unwanted or unwarranted.3 Irrespective of the reason for palliative care admission, patients have the right to make decisions about their healthcare, now and for the future. Informed decision-making about treatment requires that patients with life-limiting illnesses, and others making decisions on the patient’s behalf, understand the consequences of potential treatments. However, many patients are too ill at the end of life to make treatment decisions or discuss their preferences for place of death, family involvement, or spiritual care.

This chapter explores the role of communication in ACP, discussion points in an ACP conversation, and communication strategies for initiating and maintaining ongoing dialogue about ACP with patients and family members.

Conversation Through the ACP Process

The ACP process has three key components: (a) a guided discussion to provide information and explore healthcare options and treatment preferences; (b) appointment of a proxy or substitute decision-maker; and (c) expression of a person’s wishes for care, preferably in writing. A guided ACP discussion(s) has a number of key elements to assist patients in clarifying their end-of-life healthcare preferences. Discussions are designed to assist individuals to understand their medical condition and potential future complications; consider the benefits and burdens of current and future treatments; reflect on their goals, values, and personal beliefs to guide future care; discuss choices with family and/or important others and healthcare providers; decide on a decision-maker in the event that the person is unable to make decisions or communicate; and document these choices.

To participate in ACP, patients need to have knowledge about their life-limiting illness and possible outcomes so they can determine their healthcare preferences. In a person-centered approach, information is not merely a biomedical description of the disease; patients need to explore the illness in terms of their experience and its potential impact and consequences of living with the disease.4 The palliative care provider’s role is to ascertain what the patient and family understands of the diagnosis and prognosis and to facilitate a discussion that explores what matters to them. The discussion can simply begin with: “Tell me what you understand about your illness.”

Patients need information about their illness trajectory, cardiopulmonary resuscitation; potential treatment options such as ventilation, artificial nutrition, and hydration; and, more specifically, comfort care. Patients can easily become confused between treatments they received in the curative phase of their illness and those offered as palliation—as treatment may be the same but for different purposes. A key element of ACP discussions must include decisions about when to have treatment and when to stop treatment, and an overview of acceptable alternatives should be discussed. Patient decision-making relies on the thoroughness of discussion about current and future benefits and burdens of treatment. Healthcare providers need to help patients understand the likeliness of treatment outcomes and to consider how long treatment should continue and what symptoms and side effects are acceptable.

Religion, spirituality, and culture interplay to influence future care decisions.5 Different religions with their specific values, beliefs, and practices can shape a person’s illness meaning and influence future treatment options.6 More broadly, spirituality is a part of how we think about the world and ourselves. As palliative care providers help individuals explore their values and beliefs, they address patients’ dimensions of spirituality; the meaning they attribute to their life, their sense of purpose, and their relationship with themselves and others are a part of how they make sense of their world.5,7

Culture can influence who participates in the discussion, who makes the decisions, what types of decisions are made, and what rituals are important in end-of-life care. In this exploration, the decisions the patient and/or family (and/or community) make can challenge palliative care providers’ beliefs about what constitutes good end-of-life care. ACP is based on Western values and can be contrary to a family’s own cultural beliefs.8 A family’s decision to withhold prognostic information can be difficult in a Western medical culture that values and promotes truth-telling in healthcare. Cultural humility can assist palliative care providers to understand their own cultural positioning, both personally and professionally.9,10 It is in the process of critical reflection that our own cultural complexities become evident. In ACP, cultural humility also requires palliative care providers to engage in ACP themselves to be truly self-aware.

Family members and significant others form an important part of the ACP process. Choices about who participates in the discussion are influenced by personal preferences as well as religious and cultural influences. Before treatment options are fully explored, the patient must decide, if able, about how he or she wants the process to proceed. The sequence in which these discussions occur can vary. Some may prefer to talk with palliative care team members first to become clear about their goals and future treatment preferences; others may prefer the discussion to occur in consultation with the family and health providers; while some may be present at the conversation but expect the family to lead. Finally some, particularly older people, may even prefer that the doctor make the decisions.

The Appointment of a Decision-Maker

With the involvement of the family and/or significant others, patients may choose to nominate and legally identify a person(s) to make decisions on their behalf in the event they become unable to make decisions. The appointment of a decision-maker is done informally in some countries or states; in other places, it is a legal process with powers of attorney or guardianship to make decisions on the behalf of the person who is not competent or able to do so. Choice of a substitute decision-maker or proxy is based on trust, but there are other factors that also need to be considered, including whether the chosen person is willing, available, and capable. Increasingly, families are scattered geographically, so it is hard for family members to remain informed and have an understanding of the context in which the patient is living/dying. It is not a unique scenario where a son returns home to insist his mother be treated, whereas those who have lived locally have witnessed the deterioration and recognize her declining health. Alternatively, the proxy may actually be sicker than the person for whom he or she is making decisions.

A Written Plan

Internationally and nationally, the forms of documentation vary that detail healthcare wishes such as living wills, advance directives, and statements of choices. Although there are inconsistencies within and between countries regarding the terminology and legislative procedures used in the ACP process, there is general agreement in the literature and in practice that facilitated discussion is at the heart of the process.11,12,13,14,15

The ACP process may be different over the illness trajectory, but the need for open and ongoing communication between all parties remains the same. Palliative care providers, irrespective of their location in the healthcare system, have a responsibility to be able to initiate, facilitate, and document ACP conversations with their patients and families. ACP is only possible when there is quality communication throughout the process and that communication is clearly documented and available for future use.

Communication Strategies

Serious illness provides patients with an opportunity to prepare for a future, while possibly limited, that focuses on quality of life—a fundamental principle of palliative care. For the majority of patients, ACP concerns are not so much about treatment options as they are questions of pain and symptom management, reduced burden on their loved ones, and a desire to die in familiar surroundings.16,17,18 ACP and the provision of palliative care are intimately linked, as they provide opportunity to achieve person-centered care. A number of palliative care national associations and organizations recognize this importance and provide resources and tools for palliative care health providers to enable them to facilitate ACP in their practice (see Table 35.1).

Table 35.1 National Associations and Organization Resources and Tools for Palliative Care Health Providers

Country

Organizations/Resources

Description / Website

Web Address

United States

The Conversation Project

Tools to assist people formulate their healthcare preferences and introduce the topic with family and health professionals. Health professionals education programs available.

http://theconversationproject.org/

Elder Guru: Keeping Professionals Informed

Website designed for aged care. Provides ACP information. Direct links to all US state-based Attorney General’s Office to obtain specific ACP details.

http://www.elderguru.com/resources/

Gunderson Health System

Respecting Choices program commenced La Crosse, Wisconsin. Model used in a number of US states and internationally. Tools, resources, and training for health professionals available. Tools are also available for community. (Note there is some cost involved with some of these tools.)

http://www.gundersenhealth.org/respecting-choices

Physicians Orders for Life-Sustaining Treatment

POLST model begun in Oregon adopted in a number of states. Each site complies a variety of resources for health professionals and patients and families.

http://www.or.polst.org/

Everplans website provides access to each state to access POLST specific documents.

https://www.everplans.com/tools-and-resources/state-by-state-polst-forms

Coalition for Compassionate Care of California

http://capolst.org/

Mexico

Hospice Mazatlan

Although advance care planning is not legally recognized in Mexico, some information is available for palliative care patients.

http://www.hospicemazatlan.org/index.php?option=com_content&view=article&id=51&Itemid=55&lang=en

Canada

Canadian Hospice Palliative Care Association

ACP documents and tools for health professionals; patients, and families.

http://advancecareplanning.ca/making-your-plan.aspx

Provincial and territorial specific resources.

http://advancecareplanning.ca/making-your-plan/how-to-make-your-plan/provincialresources.aspx

Canadian Virtual Hospice

A variety of “Tools for Practice” compiled by clinical experts to facilitate ACP and end-of-life decision-making. Includes assessment and evaluation tools as well as videos to demonstrate different aspects of ACP.

http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/For+Professionals/For+Professionals/Tools+for+Practice/Advanced+care+planning+_+Decision+making.aspx?page=1#id_357bb8eb26753c8037c723f34d1a834e

Educating Future Physicians in Palliative and End-of-Life Care

ACP education program designed for health professionals; specific emphasis on physicians. For use in undergraduate, postgraduate, and continuing education. Includes useful information about how to have “the conversation,” explain life-sustaining therapy, and explore own values, which can influence ACP.

http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/For+Professionals/For+Professionals/Tools+for+Practice/Education/Facilitating+Advance+Care+ Planning_+An+Interprofessional+Education+Program+ (Curriculum+Materials).aspx

Australia

Palliative Care Australia

Provides an overview of Australian ACP with links to state-specific information.

http://www.palliativecare.org.au/AdvanceCarePlanning.aspx

Respecting Patient Choices

Based on US Respecting Choices model commenced in Melbourne and expanded to other states and territories. Provides state-specific information and documents and training for health professionals.

http://www.rpctraining.com.au/

Advance Care Planning Australia

Provides information for health professionals, patients, and families. Access to state/territory-specific information is available. Training for health professionals also provided.

http://advancecareplanning.org.au/

Clinical Practice Guidelines

  • Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregiversa.

  • These guidelines include useful phrases to assist doctors facilitate ACP.

https://www.mja.com.au/journal/2007/186/12/clinical-practice- guidelines-communicating- prognosis-and-end-life-issues-adults?0=ip_login_no_cache%3Dd1e88addd541a563c573fb749f2f5357

United Kingdom

National Council for Palliative Care

  • Information and booklets to assist health professionals facilitate ACP. Also pamphlets for the general public.

  • Also a series of booklets that address “Difficult conversation for disease specific conditions.”

http://www.ncpc.org.uk/sites/default/files/

Advance care planning: A guide for health and social care staff

http://www.ncpc.org.uk/sites/default/files/AdvanceCarePlanning.pdf

Difficult conversations (note these require a small fee):

http://www.ncpc.org.uk/difficult_conversations

National Gold Standards Framework

National initiative developed to improve the quality of end-of-life care provide information for health professionals and general public about ACP.

http://www.goldstandardsframework.org.uk/advance-care-planning

UK General Medical Council

Guidelines and tips for doctors about what to address in facilitating an ACP conversation.

http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_advance_care_planning.asp

New Zealand

National Advance Care Planning Cooperative

Includes online learning; tools and booklets that address all aspects of ACP. Designed for use in the community and by health professionals.

http://www.advancecareplanning.org.nz/

Note: ACP = advance care planning.

a Clayton JM, Hancock KM, Butow PN, Tattersall MNH, Currow DC. Med J Aust. 2007;186(12):77.

With the palliative care team appropriately prepared and equipped with information and decision-support tools, the next steps of ACP are to assess competence, appoint a proxy or substitute decision-maker, clarify values, and find opportunities along the illness trajectory to facilitate discussion. This chapter includes a set of original conversation starters (Table 35.2) that draws on a previously published framework19 and follows transition points in palliative care practice.

Table 35.2 Conversation Starters for Discussions about ACP

Transition Points

Potential Prompts in Practice

Sample of Conversation Starters

Referral to palliative care

Referral indicates

  • appointment of substitute decision maker

  • written healthcare wishes

  • not for resuscitation order

  • evidence of future care preferences

  • planned treatments

  • Clarification with the referrer about ACP information provided including:

  • “Has Joan received any advance care planning information?”

  • “Have you discussed advance care planning with her? Is there any reason why this has not occurred?”

  • “Has Joan appointed anyone as her (proxy/substitute decision maker)?”

  • “Your referral has indicated that there is an NFR order; has this been discussed with her?”

Admission to palliative care

Use of evidence in referral to confirm situation at first meeting:

  • understanding of diagnosis/prognosis

  • planned or refused treatments

  • ACP status recorded

To the patient:

  • “Simon, the information I received from the hospital tells me that you are … Can you tell me a bit more about that so I can better understand what you want?”

  • “Jack, I see that you have decided not to proceed with the surgery. Can you tell me about this so we can work with you on what care you do want?”

  • Routine palliative care practice to verify ACP status.

    • yes/no advance directive/plan

    • yes/no copy of documents in file

    • yes/no proxy appointed;

  • “no” responses leads to provision of written ACP information

  • “Simon in this admission I need to ask whether you have done any advance care planning. It is routine we ask this of everyone we admit to our service”

  • “You’re not sure about advance care planning. It is … Here I will leave some information for you to read and we can talk about it next time I visit.”

  • “You know about advance care planning. Have you made any decisions? Are they written down?”

Routine provision of ACP information

  • We provide all our clients with advance care planning information. You and your wife can read it and we’ll talk about it next time. It is really important as it will help us ensure that the care we provide is what you want (or: what your future healthcare wishes might be).”

  • “I have done ACP myself and with my family. Would it help if I talk about my experiences first?”

Identification of

  • primary carer

  • next of kin

  • family relationships

  • “I’d like to know a little bit more about you and your family. Can we work on this together? I’d like to draw a family tree/ecomap so I can understand them better. This is what it looks like.”

  • “Now that I have a better picture of who is important in your life, if you become too sick at any time to make your own healthcare decisions, who would you trust to make them for you?”

  • “I see that you have nominated your daughter to make these decisions. Does she know that you want her to do this? Does she know what decisions you would like her to make?”

Insight into illness

  • “Can you tell me about your illness? What has the doctor told you is going to happen?”

  • “Jenny, what can you tell me about your future treatment plans? I notice that … ”

Preferred site of care

  • “Mrs. Smyth, where do you prefer to be cared for if you get sicker?”

  • “Okay, so you would really like to stay at home. I’d like to talk about the sort of care that you want … ”

Discussion of ACP information provided

“Last time I visited I asked you to read this pamphlet. I’d like to take the opportunity to sit down with you and discuss it a little further.”

Ongoing palliative care management

A visit to the doctor

“I see you have been to visit your doctor again. Did he have any news to report? … He said that you weren’t getting any better. I wish the news had been better too. If we cannot make the disease stay in remission then maybe we can work on some short-term goals that you can achieve.”

A significant event

“John, it is good news that your grandson is getting married. Have you thought about … ?”

Recovery from an acute episode of the chronic illness

“John, it is good to see you home again after that bowel obstruction. You were in hospital for a very long time. Have you thought about what you want to do if you get sick again and it doesn’t go as well next time? Sometimes having a plan that prepares you for the worse makes it easier to focus on what you hope most for.”

Past caregiver experiences

  • “Have you or any of your friends had to care for a person and make decisions for them?”

  • “Have you or anyone that you know had to make decisions about treatments that might prolong life but wondered if it was the right thing to do?”

Discharge from palliative care or terminal care

Resuscitation

“I notice in the documents I received that you want to be resuscitated if your heart stops beating. Can you tell me what you expect will happen?”

Discharge planning

“Hi, Mrs. Clarke, I am here today to finalize your discharge from our service. It is good you are better now. What do you understand will happen in the future with your illness? Have you thought about … ?”

Note: ACP = advance care planning.

ACP Discussion Points

In any admission to a healthcare service, there are routine practices. Patients expect healthcare providers to ask questions, take vital signs, conduct an examination, and collect information. ACP information could form part of this “routine” collection. Useful information may already be evident in the referral information. Information about competence level, appointment of a substitute decision-maker, and advance directives or plans may be absent from a referral, partly because those who designed such documents did not consider requesting such information. As part of the admission process, the palliative care provider needs to know what the patient understands about his or her diagnosis and prognosis.20,21 This understanding may also extend to the family and/or significant others.

In addition to assessing understanding, patient competence needs to be assessed. An assessment of competence in any detail is beyond the scope of this chapter. Briefly, before a patient is able to make an advance care plan, his or her competence must be assessed. To be considered competent, patients must be able to understand and reflect on their illness in accordance with their own values and belief systems.

During serious illness, a patient’s competence may fluctuate. If possible, providers should delay decisions until they can establish if the patient is able to make his or her own wishes known. It is also important to remember that despite diminished competence, a patient may still be able to participate in the decision-making process. The patient may lack capacity to make medical decisions but still be able to contribute meaningfully to a discussion about care and choose a proxy for more complex care decisions. If a patient is assessed as mentally incompetent, then decision-making responsibility rests with the appointed proxy. If a proxy has not been appointed, some jurisdictions identify who has decision-making responsibility.

Following affirmation of mental competence, the palliative care provider must establish whether a substitute decision-maker(s), sometimes called a proxy, has been appointed. If this has already been achieved, then the proxy should participate in the discussion. It remains, however, the patient’s choice whether to have the proxy present in the initial conversations as he or she clarifies what is important. A patient may choose to have the first conversation before involving the proxy.

An important aspect for all those involved in palliative care is the person’s preferred place of care and place of death. There are number of reports that identify that patients prefer to die at home,16,17,18 but this is not often achieved due to high symptom burden, caregiver exhaustion, or failure to ask. When it is clear that a patient has indicated the preferred place of care, then the question follows: “Given that you have indicated you would like to be cared for at home, can you talk about the care that you want?”

Decision-Support Tools

Increasingly, a range of decision support tools are being used to assist individuals and their families to make choices between different treatment options. These aids include structured interviews, scenario-based decisions, value clarification, interactive CDs/DVDs, and self-directed online choices (see Box 35.1).

Barriers to and Enablers of Effective ACP Discussions

Despite the World Health Organization’s endorsement and widespread government support for ACP in developed and developing countries, as well as community support, utilization of ACP across all countries remains low. Multiple interconnected barriers contribute to the lack of presence. These barriers are discussed in detail next, with consideration of potential ways to overcome these barriers.

Lack of Knowledge of ACP

Reluctance for patients to engage in ACP may simply be due to a lack of knowledge about the process. Despite the increasing global spread since its inception in the United States in the 1990s, ACP still remains an unfamiliar concept in public discourse. Palliative care increasingly includes patients with non-cancer-related diseases such as dementia,22 lung disease,23,24,25 renal disease,26,27 and heart failure,28 where ACP discussions are less common than among patients with cancer.29

The crisis response to sudden deterioration in health status is created when loved ones and healthcare providers are not clear about the range and scope of care wanted. The concept of palliative care advocates having end-of-life conversations early in the illness trajectory.30 These conversations focus on elucidating personal values, which can be used to inform healthcare decision-making.31 Patients can reflect and consider their future healthcare decisions32 before the onset of a crisis that can occur over the illness trajectory.

Public health initiatives to promote and educate about ACP are important. In a number of countries, federal and state governments and palliative care organizations have developed public campaigns to inform the general public about ACP. These strategies include government-sponsored websites with information about ACP and guidance on how to proceed to develop a plan, distribution of ACP pamphlets in plain language,33 training volunteers to talk through end-of-life issues in their community,34 and providing access to tools and documents to assist people to begin ACP. In the United States, “The Conversation Project,” designed to help people talk about their end-of-life care, include in the tool kit a guide called “How to talk to your doctor (or any member of your healthcare team).”

Who Is Responsible for Facilitating ACP?

Confusion exists about who is responsible for initiating and facilitating ongoing ACP discussions.24 This leads to the problem that ACP is always “someone else’s” responsibility. Despite promotion by governments and recognition of ACP in palliative care guidelines,35,36,37 many healthcare providers remain reluctant to have an ACP conversation. Two recent UK surveys,38,39 consisting of 2,055 members of the general public and 1,003 general practitioners (GPs), found that 25% of GPs had never initiated a conversation about end-of-life care wishes. However, 40% of GPs indicated they were prepared personally for the end of life, but only 8% had documented their end-of-life wishes. For physicians, reluctance to engage in ACP with patients is often linked to difficulties in prognostication in some disease groups,40 whereas other healthcare providers report they are waiting for the patient to raise the issue.41 A consequence of providers’ inability or reluctance means that many people with life-limiting illnesses, who have been in the care of generalist and specialist healthcare providers over their protracted disease trajectory, reach the palliative phase of their illness without ever having had “the conversation.” A recent US survey of healthcare providers about ACP and end-of-life care suggested that palliative healthcare providers have an important role in facilitating ACP.42

Provider discomfort in talking about end-of-life matters is not matched by discomfort in patients who benefit from ACP. Interestingly, despite 83% of the general public stating they were uncomfortable talking about death, 90% of the general public surveyed stated that health professionals should receive compulsory training to learn how to talk about end-of-life matters sensitively. There is a clear difference between “death talk” with the general public and the clientele of palliative care.

Research demonstrates that provision of ACP information alone is insufficient to motivate the majority of people to proceed with the ACP process and formally document their wishes.43,44 People with life-limiting illness expect healthcare providers to raise the issue,15,45,46 and interactions with such providers are known to increase ACP completions.44 Palliative care providers need to be confident and comfortable facilitating these conversations. A variety of communication workshops have been developed to prepare healthcare providers to facilitate ACP. These vary in focus and intensity, from a generalist approach to disease-specific workshops that can extend from 1 to 3 days. The difficulty with such workshops is that they may increase healthcare provider knowledge, but the skills do not necessarily translate into practice.47,48 An important component of the educational process is effective mentoring and opportunity to practice and assess competencies that will encourage incorporation of ACP into routine practice. More important, palliative care providers, working toward cultural humility, need to engage in their own ACP.

“I’m Not Ready to Talk About It”

Lack of acceptance of a terminal prognosis49 or death preparedness50 is seen as a major barrier to ACP. If patients remain focused on cure or survival, they may be unwilling to accept the reality that they are dying.46 As a result of this failure to engage in ACP conversations, it could be assumed that the default position is to treat at all costs. These costs are not only financial but, more important, are an emotional cost to family and staff. The reverse may also be true, where family members or significant others are “not ready” to discuss future healthcare decisions, as they expect their loved one will get better. In this case scenario, the dying person may acquiesce to unwanted treatment at the behest of the family. Some cultural groups believe that discussing death will hasten it, create a bad omen for possible health outcomes, or encourage the dying person to give up.

Reluctance to prepare for end-of-life care is not limited to the individual with advanced disease or the family; healthcare providers may also find such conversations stressful, with patients choosing to avoid end-of-life discussions to protect the doctor.40 Healthcare providers’ perception that a person is “not ready” to discuss can also be an excuse for family and providers not to begin ACP discussions.

High Symptom Burden

A fundamental principle of palliative care is early involvement of the palliative care team in a patient’s illness trajectory.51 However, referrals are not a common occurrence due to organizational barriers, healthcare provider reluctance to refer early to palliative care, and health insurance structures that restrict palliative care access. Patients admitted to palliative care services late in the illness trajectory usually have high symptom burden, which may limit their capacity to engage in an ACP conversation. Understandably, patients with severe pain or other intractable symptoms often associated with severe emotional distress find it difficult to focus on end-of-life discussions.52,53 Research confirms that patients admitted to palliative care experiencing high levels of pain and nausea tend to refuse do-not-resuscitate orders,53 as they are too uncomfortable to consider their options. In person-centered care, symptom management becomes the primary concern before initiating an ACP discussion. Yet ACP can guide symptom management by providing information such as whether the person prefers to be pain-free or trade off some pain to retain a clearer mind.

If a palliative healthcare provider is not able to engage in an ACP discussion, he or she needs to set up another time or refer the patient to another member of the palliative care team. The size and scope of the palliative care team and its administering body will influence this decision. Roles and responsibilities may be distributed equally across the team or quite focused for different discipline areas. For example, the physician’s role might be to discuss treatment options, while the social worker addresses appointment of a substitute decision-maker and the nurse discusses location and type of care. Alternatively, the strength of relationships between specific palliative care team members and the person with the life-limiting illness may dictate who is best suited to facilitate ACP.4,54

Interpersonal Relationships

The quality of the relationships within the family and/or significant others and with healthcare providers can affect ACP.55 Individual family circumstances and their history can be complex and layered with emotional, psychological, and financial issues. Palliative care team members often find the most complex and difficult family relationships would benefit from ACP discussion, but they require expert providers to facilitate such conversations.

Difficulties may begin with choosing the right person to be the substitute decision-maker. A patient may perceive the family has expectations as to who would be selected as a substitute decision-maker. In one situation, an elderly woman was fearful her daughter “would bully her way into having to be that person because she’d just expect that.” A palliative healthcare provider encouraged her to talk with her daughter. It became clear that the daughter did not want the role, and the family reached agreement about the most suitable person to be nominated as proxy.56

Some healthcare providers perceive that such a discussion will impair therapeutic relationships. Community palliative care nurses report a concern that introduction of ACP may affect their relationship with the patient and limit access to the home. Yet GPs report that open discussion strengthens their relationship with patients.57 It is clear when families are harmonious, open to discussion, and able to support their loved one, formal documentation may be considered unnecessary. In complex family relationships with disharmony and potential misunderstanding, however, ACP may help resolve conflicts and build trust with healthcare providers.57 In such situations, written directives or plans become an important goal to achieve person-centered care.

Cultural Barriers

The dominance of a white-centric healthcare system58 has meant that minority groups have suffered from discrimination in their care.15,59,60 This has created a long-standing cultural mistrust of a healthcare system that has for generations failed to respect cultural needs and often delivered suboptimal care. Much US research in ACP with different cultural groups has highlighted this mistrust and shown that there is low ACP utilization within these groups and a tendency to request medical interventions. US-based research also shows that higher educated and white people are more likely to engage with ACP.59,60 Failure to provide ACP information at an appropriate literacy level, as well as in a culturally acceptable form, may limit ACP to people located within a particular culture and class.15,61

In addition to cultural barriers created through different values and practices, there are also language barriers for people who have English as a second language. People may be able to speak some English, but engaging in an ACP conversation is unfair and unjust to the person and family. Healthcare providers need interpreters working alongside them to facilitate a discussion. Although there is written ACP information available in different languages, some patients and families will have limited or no literacy. More recently, Web-based videos and YouTube clips have appeared that explain ACP in different languages. These communication means, if reliable, open up the potential to ensure ACP equity.

Time

Time is an ongoing problem for all parties trying to achieve successful ACP. Yet time can also be a convenient excuse to avoid a sensitive and delicate topic. Medical appointments are often taken up dealing with the current health situation with no time left for the patient to raise questions about the future. Physicians report they have no time to have such discussions.24,62,63 Realistically, given the limited uptake of ACP internationally, palliative care providers often find that they are required to initiate the ACP conversation. Late referrals to palliative care services also means truncated time to establish rapport to the level required to discuss sensitive issues and less opportunity to conduct an in-depth discussion.

Conclusion

ACP conversations provide individuals and their families with opportunities to make choices and express their preferences for medical treatment, social, and spiritual support in advance of their death. The communication approach undertaken in ACP needs to encourage a conversation with a focus on elucidating the desired place of care and of death, personal values to inform healthcare decision-making, and identification and/or confirmation of substitute decision-maker(s) and may include specific, time-limited treatment preferences. Before the palliative care team can realistically facilitate ACP, certain conditions must be present. These include the palliative care team understanding their ACP roles and responsibilities, appropriate healthcare provider ACP education, and the provision of useful decision-making tools and legislatively appropriate documents.

An understanding of the barriers to and enablers of ACP, along with the strategic use of conversation starters, can facilitate effective person-centered palliative care. ACP can help reduce family tensions and bewilderment concerning the individual’s preferences and equip healthcare providers to meet the desired care needs and goals of person-centered palliative care.

References

1. Mullick A, Martin J, Sallnow L. An introduction to advance care planning in practice. BMJ. 2013;347:f6064.Find this resource:

2. Mahon MM. An advance directive in two questions. J Pain Symptom Manage. 2011;41(4):801–807.Find this resource:

3. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013;309(5):470–477.Find this resource:

4. Simpson AC. An opportunity to care? Preliminary insights from a qualitative study on advance care planning in advanced COPD. Prog Palliat Care. 2011;19(5):243–253.Find this resource:

5. Lunsford B. Religion, spirituality, culture in advance care planning. In: Rogne L, McCune SL, eds. Advance Care Planning: Communicating About Matters of Life and Death. New York, NY: Springer; 2014:89–103.Find this resource:

6. Lo B, Ruston D, Kates L, et al. Discussing religious and spiritual issues at the end of life: A practical guide for physicians. JAMA. 2002 287(6):749–754.Find this resource:

7. Chrash M, Mulich B, Patton CM. The APN role in holistic assessment and integration of spiritual assessment for advance care planning. J Am Acad Nurse Pract. 2011;23(10):530–536.Find this resource:

8. Mei Ching L, Hinderer KA, Kehl KA. A systematic review of advance directives and advance care planning in Chinese people from Eastern and Western cultures. J Hosp Palliat Nurs. 2014;16(2):75–85.Find this resource:

9. Tervalon M, Murray-Garcia J. Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education. J Health Care Poor Underserved. 1998;9(2):117–125.Find this resource:

10. Yeager KA, Bauer-Wu S. Cultural humility: Essential foundation for clinical researchers. Appl Nurs Res. 2013;26(4):251–256.Find this resource:

11. Tulsky JA. Beyond advance directives: Importance of communication skills at the end of life. JAMA. 2005;294(3):359–365.Find this resource:

12. Turner M, Payne S, O’Brien T. Mandatory communication skills training for cancer and palliative care staff: Does one size fit all? Eur J Oncol Nurs. 2011;15(5):398–403.Find this resource:

13. Black K. Advance directive communication: nurses’ and social workers’ perceptions of roles. Am J Hosp Palliat Care. 2006;23(2):175–184.Find this resource:

14. Back AL, Anderson WG, Bunch L, et al. Communication about cancer near the end of life. Cancer. 2008;113(7 Suppl):1897–1910.Find this resource:

15. Wagner GJ, Riopelle D, Steckart J, Lorenz KA, Rosenfeld KE. Provider communication and patient understanding of life-limiting illness and their relationship to patient communication of treatment preferences. J Pain Symptom Manage. 2010;39(3):527–534.Find this resource:

16. Gomes B, Higginson IJ, Calanzani N, et al. Preferences for place of death if faced with advanced cancer: A population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. August 1, 2012;23(8):2006–2015.Find this resource:

17. Wilson DM, Cohen J, Deliens L, Hewitt JA, Houttekier D. The preferred place of last days: Results of a representative population-based public survey. J Palliat Med. 2013;16(5):502–508.Find this resource:

18. Higginson IJ, Gomes B, Calanzani N, et al. Priorities for treatment, care and information if faced with serious illness: A comparative population-based survey in seven European countries. Palliat Med. February 2014;28(2):101–110.Find this resource:

19. Blackford J, Street AF. Facilitating advance care planning in community palliative care: Conversation starters across the client journey. Int J Palliat Nurs. 2013;19(3):132–139.Find this resource:

20. Blackford J, Street AF. Tracking the route to sustainability: A service evaluation tool for an advance care planning model developed for community palliative care services J Clin Nurs. 2012;21:2136–2148.Find this resource:

21. Robinson CA. “Our best hope is a cure”: Hope in the context of advance care planning. Palliat Support Care. 2012;10(02):75–82.Find this resource:

22. Dempsey D. Advance care planning for people with dementia: Benefits and challenges. Int J Palliat Nurs. 2013;19(5):227–234.Find this resource:

23. Colman RE, Curtis JR, Nelson JE, et al. Barriers to optimal palliative care of lung transplant candidates. Chest. 2013;143(3):736–743.Find this resource:

24. Gott M, Gardiner C, Small N, et al. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med. 2009;23(7):642–648.Find this resource:

25. Heffner JE. Advance care planning in chronic obstructive pulmonary disease: Barriers and opportunities. Curr Opin Pulm Med. 2011;17(2):103–109.Find this resource:

26. Janssen DJA, Spruit MA, Schols JMGA, van der Sande FM, Frenken LA, Wouters EFM. Insight into advance care planning for patients on dialysis. J Pain Symptom Manage. 2013;45(1):104–113.Find this resource:

27. Luckett T, Sellars M, Tieman J, et al. Advance care planning for adults with CKD: A systematic integrative review. Am J Kidney Dis. 2014;63(5):761–770.Find this resource:

28. Sarkar U, Schillinger D, Bibbins-Domingo K, Nápoles A, Karliner L, Pérez-Stable EJ. Patient–physicians’ information exchange in outpatient cardiac care: Time for a heart to heart? Patient Educ Couns. 2011;85(2):173–179.Find this resource:

29. Barnes S, Gardiner C, Gott M, et al. Enhancing patient-professional communication about end-of-life issues in life-limiting conditions: A critical review of the literature. J Pain Symptom Manage. December 2012;44(6):866–879.Find this resource:

30. Kellehear A. Advance care planning as a public health issue. In: Rogne L, McCune SL, eds. Advance Care Planning: Communicating About Matters of Life and Death. New York, NY: Springer; 2014:333–345.Find this resource:

31. Clarke A, Seymour J. “At the foot of a very long ladder”: Discussing the end of life with older people and informal caregivers. J Pain Symptom Manage. 2010;40(6):857–869.Find this resource:

32. Bomba PA, Vermilyea D. Integrating POLST into palliative care guidelines: A paradigm shift in advance care planning in oncology. J Natl Compr Cancer. 2006;4(8):819–829.Find this resource:

33. Nielson A, Baxter S. Advance care planning in Canada: Past experience and current strategies. In: Thomas K, Lobo B, eds. Advance Care Planning in End of Life Care. Oxford: Oxford University Press; 2011:219–228.Find this resource:

34. Sanders C, Seymour J, Clarke A, Gott M, Welton M. Development of a peer education programme for advance end-of-life care planning. Int J Palliat Nurs. 2006;12(5):214–223.Find this resource:

35. Ferris FD, Balfour HM, Bowen K, et al. A model to guide patient and family care: Based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24(2):106–123.Find this resource:

36. National Hospice and Palliative Care Organisation. Standards of practice for hospice programs. http://www.nhpco.org/i4a/pages/index.cfm?pageid=5308. Accessed July 20, 2011.

37. Dahlin C, ed. Clinical Practice Guidelines for Quality Palliative Care. 3rd ed. Brooklyn, NY: National Consensus Project for Quality Palliative Care; 2013.Find this resource:

38. ComRes. Poll digest—Social—NCPC: Dying matters survey. http://www.comres.co.uk/polls/ncpc-dying-matters-survey/. 2014.

39. Smith R, Kelly N. Global attempts to avoid talking directly about death and dying. http://blogs.bmj.com/bmj/2012/08/16/richard-smith-and-nataly-kelly-global-attempts-to-avoid-talking-directly-about-death-and-dying/. Published August 12, 2012.

40. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: A systematic review. Palliat Med. 2007;21(6):507–517.Find this resource:

41. De Vleminck A, Houttekier D, Pardon K, et al. Barriers and facilitators for general practitioners to engage in advance care planning: A systematic review. Scand J Prim Health Care. 2013;31(4):215–226.Find this resource:

42. Mattes MD, Tung K, Baum R, Parikh K, Ashamalla H. Understanding the views of those who care for patients with cancer on advance care planning and end-of-life care. Am J Hosp Palliat Care. June 2014;16:1–8.Find this resource:

43. Brunnhuber K, Nash S, Meier DE, Weissman DE, Woodcock J. Putting Evidence Into Practice: Palliative Care. Hoboken, NJ: BMJ Publishing Group; 2008.Find this resource:

44. Ramsaroop SD, Reid MC, Adelman RD. Completing an advance directive in the primary care setting: What do we need for success? J Am Geriatr Soc. 2007;55(2):277–283.Find this resource:

45. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ. 2006;333(7574):886–890.Find this resource:

46. Barnes KA, Barlow CA, Harrington J, et al. Advance care planning discussions in advanced cancer: Analysis of dialogues between patients and care planning mediators. Palliat Support Care. March 2011;9(1):73–79.Find this resource:

47. Gysels M, Richardson A, Higginson IJ. Communication training for health professionals who care for patients with cancer: A systematic review of effectiveness. Support Care Cancer. 2004;12(10):692–700.Find this resource:

48. Moore PM, Wilkinson SSM, Rivera Mercado S. Communication skills training for health professionals working with cancer patients, their families and/or carers. Cochrane Database Syst Rev. 2004;2:CD003751.Find this resource:

49. Zimmermann C. Acceptance of dying: A discourse analysis of palliative care literature. Soc Sci Med. 2012;75(1):217–224.Find this resource:

50. McLeod-Sordjan R. Death preparedness: A concept analysis. J Adv Nurs. 2014;70(5):1008–1019.Find this resource:

51. World Health Organization Executive Board. Report by the Secretariat: Strengthening of palliative care as a component of integrated treatment throughout the life course. Vol EB134/282013. January 23, 2014.Find this resource:

52. Delgado-Guay MO, Parsons HA, Li Z, Palmer LJ, Bruera E. Symptom distress, interventions, and outcomes of intensive care unit cancer patients referred to a palliative care consult team. Cancer. 2009;115(2):437–445.Find this resource:

53. Parsons HA, de la Cruz MJ, Zhukovsky DS, et al. Characteristics of patients who refuse do-not-resuscitate orders upon admission to an acute palliative care unit in a comprehensive cancer center. Cancer. 2010;116(12):3061–3070.Find this resource:

54. Educating Future Physicians in Palliative and End-of-Life Care. Facilitating advance care planning: An interprofessional educational program [Curriculum Materials]. http://market-marche.chpca.net/Educating-Future-Physicians-in-Palliative-and-End-of-Life-Care-Curriculum-Materials-and-Training-Guide. 2008.

55. Bibby R. “I hope he goes first”: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues? Br J Learn Disabil. 2013;41(2):94–105.Find this resource:

56. Street A, Blackford J, Threlkeld G, Bidstrup B, Downing J. Entrust-U: Evaluative Life Review and Advance Care Planning. The Entrust-U Final Report to the Palliative Care Program of the Department of Health. Melbourne: La Trobe University; 2011.Find this resource:

57. Rhee JJ, Zwar NA, Kemp LA. Advance care planning and interpersonal relationships: A two way street. Fam Pract. 2012;30(2):219–226.Find this resource:

58. Blackford J. Cultural frameworks of nursing practice: Exposing a whitecentric health care culture. Nurs Inq. 2003;10(4):236–244.Find this resource:

59. Dow LA, Matsuyama RK, Ramakrishnan V, et al. Paradoxes in advance care planning: The complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol. 2010;28(2):299–304.Find this resource:

60. Guo Y, Palmer JL, Bianty J, Konzen B, Shin KR, Bruera E. Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: Advanced care planning implications. J Palliat Med. 2010;13:513–517.Find this resource:

61. Sudore RL, Landefeld CS, Barnes DE, et al. An advance directive redesigned to meet the literacy level of most adults: A randomized trial. Patient Educ Couns. 2007;69(1–3):165–195.Find this resource:

62. DuBenske LL, Chih M-Y, Dinauer S, Gustafson DH, Cleary JF. Development and implementation of a clinician reporting system for advanced stage cancer: Initial lessons learned. J Am Med Inform Assoc. September 1, 2008;15(5):679–686.Find this resource:

63. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest. June 2005;127(6):2188–2196.Find this resource: