‘The shock of diagnosis’: Qualitative accounts from people with Motor Neurone Disease reflecting the need for more person-centred care

Abstract

The diagnosis of Motor Neurone Disease (MND) is devastating for people with MND (PwMND) and their families. The objective of this study is to describe the experiences of PwMND in receiving the diagnosis in order to inform a more person-centred approach to communicating such bad news. The design was an anonymous postal survey facilitated by all MND associations across Australia (2014-15). Survey questions centred on the SPIKES protocol for communicating bad news; each question contained an area for written responses, which were thematically analysed for content. Two hundred and forty-eight responses were received from people with MND (29% response rate). Four themes emerged: challenges in being diagnosed with MND; the emotions experienced; the good and the bad; and links to further information and support. Receiving such a diagnosis requires preparation, forethought, sensitive and individualised care on the part of the neurologist, including where and how the diagnosis is given; the supports required; and timing, amounts and sources of giving information. The emotional reactions of the neurologist also caused a lasting impression on those receiving the diagnosis. This study could form the basis for best practice programs implementing a more person-centred approach to caring for PwMND right from the diagnosis stage. The focus needs to shift on the person's values, preferences, psychosocial and existential concerns in the context of the underlying disease experience and the manner clinical practice is delivered.

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

“…However, 36% to 56% of patients rated their doctor's ability as average or below average [28,29]. Similarly, qualitative studies also revealed mixed results with patients sharing both positive and negative experiences [30,31] although a study of a single centre which was following international guidelines for MND care received only positive feedback [32].…”

“…On the contrary, doctors who were judged to possess poor skills only spent an average of 13.4 minutes on the consultation [29]. Patients were often frustrated with a very short consultation as they did not have the opportunity for discussion [31]. At the same time, they knew the clinicians were in high demand and it could take months for the next appointment [34].…”

“…Qualitative studies and qualitative comments in quantitative studies sometimes highlighted the need for doctors to show more empathy. Patients often felt that their doctors did not approach such a serious diagnosis in a caring and sensitive way and were described as 'detached', 'very clinical' and 'insensitive' [31,38]. Similarly, Pavey et al [34] described that patients considered that doctors were unwilling to be personally involved and offer emotional support; a participant in the Hughes et al [33] study also reported feeling 'dehumanised'.…”

<p>Health care professionals&rsquo; experiences and enactment of person-centered care at a multidisciplinary outpatient specialty clinic</p>

“…In a report by the Institute of Medicine, Committee on Quality Health Care in America,26 most HCPs stated that their way of working was PCC; however, the patients reported frustration regarding their chance to participate in their own care. Several studies show that HCPs need to shift focus to be more oriented to the patient’s own values, thoughts, and experiences of their illness, to be more person-centered2,31–33 rather than based on prevailing norms 34. Previous research points out that HCPs’ own understanding of PCC is of relevance when providing safe care of good quality 35.…”

Communicating psychosocial well-being in motor neurone disease to staff: results from a World Café approach

“…Receiving a diagnosis of MND can come as a shock to patients and family members, and people with MND experience a range of emotions when being communicated the diagnosis [7]. Addressing the emotional needs of people with MND influences their quality of life (QoL) [8].…”