Patient-Centred Health Care

Achieving Co-ordination, Communication and Innovation

M. Keating, A. McDermott, K. Montgomery, M. Keating, A. McDermott, K. Montgomery

• Publisher: Palgrave Macmillan
• Year: 2013
• ISBN:
  9781137308931
• Topic: Business
• Subtopic: Management
• Index: Business

There are four core themes developed in this book which deal with critical issues, models, theories and frameworks. These expound understandings of patient centred care and the processes, practices and behaviours supporting its attainment: conceptions and cultures of patient-centred care, coordination, communication, innovation.

Part I

Conceptions and Cultures of Patient-Centred Care

1

Developments in Conceptions of Patient-Centred Care: Implementation Challenges in the Context of High-Risk Therapy

Kathleen Montgomery

Background

The term ‘patient-centred care’ (P-CC) is relatively recent, but concepts at its core have been part of health care for over a century. Early hints of P-CC were evident in the words of Dr William Mayo, founder of the renowned Mayo Clinic in Rochester, Minnesota, in 1910: ‘the best interest of the patient is the only interest to be considered’ (Berry, 2004). Nevertheless, this well-intended goal still placed the doctor as the central voice in the doctor–patient relationship, in a somewhat paternalistic ‘doctor-knows-best’ approach. That is, doctors were the experts, and – while Mayo insisted that the patient’s interest should prevail – it was the doctor’s judgement about what would be in the best interest of the patient.

Not until the 1970s was greater attention devoted to the patient as an active participant in the doctor–patient interaction, rather than being a passive recipient of the doctor’s best judgement. However, this new approach was not without some controversy. Practitioners and scholars alike expressed concern that inviting greater patient involvement in medical decision-making would demystify medicine (Freidson, 1970; Haug, 1973), opening the door for challenges to medical judgement from a lay public who did not have appropriate education or expertise to weigh in.

Other observers saw advantages to a more involved, informed and educated patient population, and this latter perspective became dominant, reinforced by several strands of empirical research investigating how to improve healthcare quality. One strand emphasized the importance of better communication between doctors and their patients, including listening to patients and crediting patients’ own attributions of their symptoms as a salient source of diagnostic information (Waitzkin and Stoeckle, 1972).

Also part of this strand was a growing awareness of the role of patient education, including the need for doctors to make a greater effort to assure that information was conveyed to patients in an understandable way (Korsch, 1989; Roter and Hall, 2006). Initially, this movement was thought to be a valuable way to improve patient compliance with and adherence to medical recommendations (DiMatteo et al., 2002). Greater patient education also has been viewed as important to facilitate patient involvement in shared healthcare decisions that affect them (Barry et al., 1995; Hibbard, 2007).

A second strand called for attention to patient satisfaction (Ware et al., 1983), with a particular focus on defining the concept and measuring its determinants and outcomes. Initial patient-satisfaction dimensions were concerned with issues of access, availability, cost and the technical quality of health care. Paralleling work on doctor–patient communication, the concept of patient satisfaction was subsequently widened to include dimensions assessing the character of the doctor–patient relationship and the extent to which patients perceived that they were cared about, not just cared for.

These areas of attention coalesced and paved the way for acceptance of what is now known as P-CC.

Landmark articulations of patient-centred care

The P-CC movement began in earnest with concerted efforts to be more concrete and draw together these threads into a formal model of care. Two landmark studies have served as the foundation for the current extensive literature on P-CC.

The first of these studies is attributed to the Picker Institute, founded by Henry Picker in 1986. Picker, who many consider to be the pioneer of P-CC, proclaimed that understanding and respecting patients’ values, preferences and expressed needs constitute the core principles of P-CC. In a classic report from the Picker Institute, Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care (Gerteis et al., 1993), several dimensions of P-CC were articulated. These included (1) respect for patients’ values, preferences and expressed needs, (2) coordination and integration of care, (3) information, communication and education, (4) physical comfort, (5) emotional support and alleviation of fear and anxiety, (6) involvement of family and friends and (7) transition and continuity of care.

In essence, these dimensions capture the focus on the patient’s interests as potentially distinct from the doctor’s, as well as the need for healthcare professionals to engage in greater education and communication.

The second landmark articulation emerged from the 2001 report from the Institute of Medicine, Crossing the Quality Chasm, which was the result of an extensive study aimed at improving the quality of health care in the United States. The report articulated six dimensions of quality: that health care should be (1) safe, (2) effective, (3) timely, (4) efficient, (5) equitable and (6) patient-centred. The last dimension, patient-centredness, was further articulated to mean ‘providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions’ (Institute of Medicine, 2001, p. 3). The report further clarifies that patient-centredness should consider ‘the patient [as] the source of control’ in decisions about his or her care (Institute of Medicine, 2001, p. 304). This has been succinctly captured in the rallying call: ‘Nothing about me without me’ (Delbanco et al., 2001).

The tenets of P-CC have been enthusiastically endorsed by healthcare professionals, policy makers and patient advocates across the globe. There is a growing literature about implementing P-CC in various contexts, including primary care, acute care, disability and mental health care, and chronic illness (Lynn et al., 2007). However, there is scant literature about the challenges of applying P-CC in the specialized context of high-risk therapy for serious illness. Challenging aspects of care in this context occur both at the informed-consent process and in delivery of the therapy itself. The following discussion draws on two empirical studies to elaborate on these challenges.

Patient-centred care and the informed-consent process

As noted above, a central principle of P-CC is to ensure that patient values and preferences guide all clinical decisions and that patients are given the necessary information about proposed treatments they are being asked to consent to. Consistent with P-CC tenets are bioethical principles of informed consent, whereby a patient’s consent must be fully informed, including the disclosure of the risks and benefits of any proposed procedure. While the Institute of Medicine’s P-CC principle adds the qualifier that patients should be invited to participate in healthcare decisions to the extent they choose, the bioethical principles do not allow for the possibility that patients might not choose to become informed, yet may still agree to proceed with treatment. Furthermore, legal precedent requires that ‘choice is meaningless unless it is made on the basis of relevant information and advice’ (Canterbury v Spence, 1972).

The reality of this dilemma has been seen in a study of healthcare professionals engaged in the care of patients undergoing allogeneic bone marrow [stem cell] transplantation, offered only to patients with advanced cancer when previous treatments have been unsuccessful (for additional details of the study, see Jordens et al., 2013).¹ The therapy is aggressive, involving prolonged hospitalization, recurrent invasive medical procedures, with many potential severe and toxic side effects. Thus, healthcare professionals are deeply committed to assuring that patients fully understand the nature of the therapy and its attendant risks before undertaking any associated procedures for the therapy. These professionals report concerted and dedicated efforts to educate patients about the therapy, including multiple physician consultations with patients and families, written materials and opportunities to meet with former patients and with the healthcare team.

Nevertheless, the study found a widespread lack of engagement on the part of patients to respond to and interact with healthcare professionals’ efforts inform them, including occasional outright refusal to engage in the informed-consent process. Typical observations were the ‘wakeme-when-it’s-over’ mentality, as reported by healthcare professionals working with these patients:

One girl pulled the blankets up over her head when you tried to talk to her.

Some patients will say, ‘Don’t tell me about it, I don’t want to know.’

Another oncology nurse involved in the patient-education process lamented,

He obviously wasn’t hearing it.

In frustration, professionals further reported that some patients gave their consent but later complained that they hadn’t been fully informed, with a recurring comment from patients that

If I had known what it would be like, I wouldn’t have done it.

Yet, these professionals could readily document their systematic efforts to inform patients and the patients’ agreement to proceed, which was frequently followed by a somewhat defensive aside to the researchers:

Yes, they were told . . . they just didn’t want to hear it.

Other comments from members of the healthcare team revealed the potential for conflict and blame among team members for failing to convince the patients to become involved in the informed-consent process.

As shown in this research, the P-CC tenet of respecting patients’ values and preferences (including a preference not to become informed before undergoing treatment) can be in direct conflict with legal and bioethics principles that require a treatment decision to be fully informed in order to be valid. P-CC proponents may argue that patients and their families may feel too burdened by disease to engage in the informed-consent process and should be allowed not to engage, while healthcare professionals may argue that the high degree of risk from the treatment itself makes it even more important that patients understand the treatment regimen they are consenting to undergo.

This study reveals a little-recognized paradox, and it is clear that simply reiterating the basic P-CC tenets will not provide sufficient guidance to healthcare professionals about how to deal with this dilemma.

Patient-centred care and the delivery of high-risk therapy

A second study within a similar context reveals additional difficulties applying the central tenet of P-CC that the patient is the source of control and that all efforts should be made to ensure the patient’s emotional and physical comfort. In this study, interviews were conducted with patients undergoing autologous stem cell reinfusion for advanced cancer; family members were also interviewed. The study included only patients who had given their consent for the procedure (for additional details of the study, see Montgomery and Little, 2011).²

As discussed above in the section on informed consent, considering the patient as the source of control is assumed to mean that it is the patient’s choice about whether to proceed with treatment or not. However, P-CC tenets are silent about the reverse situation: when a patient may wish to proceed with further treatment, but the medical team decides that further treatment would be futile. As the following comments reveal, such a predicament caused intense emotional distress for patients and their families, who were desperate for successful treatment for the cancer:

[Family member]: The oncology [team] announced that they can’t do anything about it, she will die. I thought, this is a big hospital, is supposed to have a more, like machine and those kinds of things . . . and do something about it. They can’t do anything to save her. I looked at him and [said] ‘I know there’s another machine there.’

[Family member]: It wasn’t long after the stem cell [reinfusion] that they said, ‘Sorry, we can’t do anything more for you.’ We felt like the doctors had just given up.

Although patients could exercise their preferences to insist that treatment be stopped or never started in the first place, it was the judgement of the medical professionals that determined when treatment would no longer be administered. This clearly illustrates the limitations in interpreting the P-CC tenet that the patient is the source of control.

Another telling finding from this study is that, not only was the patient not the source of control, but, to a large extent, neither were the healthcare professionals. Rather, the disease itself was in control. Doctors were able to administer the treatment and to decide when to conclude treatment, but they were not able to control whether or not the treatment was effective, nor the body’s response to the treatment. Patients and family members expressed this realization, often talking of the disease as a distinct and dominant actor. Below are two examples:

[Family member]: The lymphoma was just too aggressive, just too quick growing for the stem cells to mature enough to work.

[Patient]: At the moment my cells are friendly cells and they’re accepting the cancer . . . they’re not fighting it.

Another tenet of P-CC that is extraordinarily difficult to adhere to in some contexts is that of providing patients with physical comfort, emotional support and alleviating fear and anxiety. This is due in part to the frightening nature of cancer, coupled with the uncertainty of the treatment side effects and outcome. While healthcare professionals routinely embrace opportunities to care for such patients with tenderness and kindness, the interventions for patients undergoing ASCT nevertheless can be severe and upsetting. Indeed, this was recognized by an oncology nurse in a recent New York Times editorial reflecting on the challenges of harsh chemotherapy. She noted that, for some patients, ‘in order to heal [them], we must first hurt’ (Brown, 2012).

While patients in this study seemed to accept that there was no alternative to the demands of therapy, they nevertheless experienced substantial discomfort and emotional distress, as one patient explained,

[Patient]: Once you get a cancer like I’ve got, your body’s not your own anymore. You’ve got to give over . . . you are pushed and needles and everything . . . you’re on the tables, you’re on the x-rays, you’re this, you’re that. What went on there this morning wasn’t even easy, thing put in there and ‘put your arms back up’ and then they inject this dye into you, and you burn up all over, and it feels terrible.

Finally, the patient’s experience described here demonstrates a particular challenge for the healthcare provider. That is, despite recognizing that the therapeutic procedures would be likely to cause physical and emotional discomfort for patients (as noted above by the oncology nurse’s editorial), there is little attention in the P-CC guidelines to the extra burden this reality places on the healthcare professionals.

Realities of serious illness, high-risk therapy and patient-centred care

The two studies described in this chapter highlight the contextual limitations of the P-CC approach. Most important, it is not realistic to expect formulations of P-CC at the level of primary care, acute care or even chronic care, to be readily applicable to the context of serious illness and aggressive, high-risk therapy. In these circumstances, it is unrealistic to maintain the P-CC tenets that the patient is the source of control, that patient values guide all healthcare treatment decisions and that physical discomfort and emotional distress can be alleviated.

First, all too often, the disease is the most dominant actor, overtaking both the patient’s and the doctor’s sense of control. Moreover, patients, who may feel overwhelmed by the disease itself, may find themselves simply unable to participate in meaningful informed-consent discussions.

Second, a patient’s own values may dictate that treatment should be continued at all costs, but those values cannot override a decision of the healthcare team to cease further treatment if, in their professional judgement, further intervention would be futile.

Third, it is impossible to protect patients unde...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• List of Tables and Figures
• Foreword
• Notes on Contributors
• Introduction
• Part I: Conceptions and Cultures of Patient-Centred Care
• Part II: Coordinating for Patient-Centred Care
• Part III: Communication in Patient-Centred Care
• Part IV: Innovations in Patient-Centred Care
• Concluding Comments
• Index