Session 9: Patients' Evaluations of Healthcare and Relationships Between Patients and Professionals; Complementary Therapies

Question 1

Why the interest in patients’ views?

Answer 1

• Evidence that patient satisfaction is an important outcome in its own right and is linked to other outcomes.
• Humanitarian and ethical impetus - rejection of paternalism, growth of consumerism
• Increased external regulation of health services, emphasis on accountability; what are you doing for patients? how are you doing it?
• Means of securing legitimacy

Question 2

Describe the policy background to the growth of interest in patients’ views of health services

Answer 2

• The NHS Plan (2000): emphasis on organising care around the patient and on accountability to patients.
• Every NHS organisation required to publish, in a Patient Prospectus, an annual account of patients’ views and the action taken as a result
• Prospectus sets out the range of local services available and the ratings they have received from patients.
• Involving patients and public in healthcare, published by Dept of Health in Sept 2001. Set of proposals building on the NHS plan and the Kennedy principles - a formal response to the Bristol inquiry.
• NHS Act (2006) placed a duty on providers of care - PCTs, NHS Trusts and Foundation Trusts to “involve and consult” patients and the public
  
  • Planning services they are responsible for
  • Developing and considering changes in the way those services are provided.
  • Decisions that affect how those services operate
• From the latest White Paper: putting patients’ views centrestage
  
  • All sources of feedback, of which complaints are an important part, should be a central mechanism for providers to assess the quality of their services. We want to avoid the experience of Mid-Staffordshire, where patient and staff concerns were continually overlooked while systemic failure in the quality of care went unchecked. Local HealthWatch will also have the power to recommend that poor services are investigated.
    *

Question 3

Describe the NHS Outcomes Framework (applicable to every healthcare provider)

Answer 3

• For 2015/16, 5 domains

1. Preventing people from dying prematurely
2. Enhancing quality of life for people with long-term conditions
3. Helping people to recover from episodes of ill health or following injury
4. Ensuring that people have a positive experience of care
5. Treating and caring for people in a safe environment and protecting them from avoidable harm.

Question 4

Gives examples of ways to give feedback

Answer 4

• NHS friends and family test: http://www.england.nhs.uk/ourwork/pe/fft/
• Service users can rate and comment on NHS services on NHS Choices website: http://www.nhs.uk/Pages/HomePage.aspx
• Range of other non-NHS websites and forums around - including both local and national

Question 5

What is the Local Healthwatch?

Answer 5

Local Healthwatch has the power to enter and view services

• Influence how services are set up and commissioned by having a seat on the local health and wellbeing board
• Produce reports which influence the way services are designed and delivered
• Provide information, advice and support about local services
• Pass information and recommendaions to Healthwatch England and the Care Quality Commission

Question 6

What is PALS?

Answer 6

Trust-based Patient Advice and Liaison Services offer confidential advice, support and information on health-related matters:

• Help with health-related questions
• Help resolve concerns or problems when using NHS
• How to get more involved in own healthcare
• Give info about the NHS
• Advise on complaints procedure (often first port of call for resolving any concerns).
• On the spot help about health services.
• Listen to patients’ concerns, suggestions and experiences
• Provide an early warning system by identifying problems or gaps in services
• Provide information about the NHS complaints procedure
  
  • ​Single complaints system (since 2009)
  • Focuses on satisfactory outcomes
  • Risk assessment to deal quickly with serous complaints
  • Independent investigators if needed
  • Specialist advocates for those with special needs

Question 7

Describe Parliamentary and Health Service Ombudsman

Answer 7

Ultimate resort

• Undertakes independent investigations into complaints that the NHS in England has not acted properly or fairly or has provided a poor service.
• Provides the ultimate, independent view of what has happened
• http://www.ombudsman.org.uk/

Question 8

Describe the NHS Hospitals Complaints Systems Review October 2013

Answer 8

• Prompted by the Francis report (and other scandals)
• Looks at how complaints about care in NHS hospitals made by patients, their carers and representatives are listened to and acted on by hospitals.
• The recommendations cover:
  
  • Improving the quality of care
  • Improving the way complaints are handled
  • Ensuring independence in the complaints procedure
• Whistleblowing
• But there are still problems. Healthwatch report in October 2014 suggested:
  
  • People still lack information on complaining
  • Lack confidence it will resolve their concern(s)
  • System complex and confusing
  • Many need support to make a complaint (but it is not clear where this support will come from)
  • Want to known if services learn from complaints (people feel like nothing has changed - want to know if their complaints have value)

Question 9

Patient complaints and Ombudsman’s reports are indirect ways of investigating patients’ views and experiences. What are direct ways?

Answer 9

• Qualitative methods
  
  • ​Interviews, focus groups, observations
  • Successful at identifying patients’ priorities and how they evaluate care
• Quantitative methods
  
  • ​Anonymity more easily guaranteed.
  • Relatively cheap and easy (less staff training required)
  • Allows monitoring of performance
  • Increased tendency to use national, validated surveys instead of locally developed DIY instruments. Local DIY instruments lack comparability, many do not have proven reliability and validity, tend to find higher levels of satisfaction, do not comply with basic standards for questionnaire design.

Question 10

What things cause dissatisfaction? How to respond to dissatisfaction?

Answer 10

Interpersonal skills: poor communication from health professionals

• Patients not allowed to report their concerns fully on their own terms - what they think is wrong with them
• Do not take full histories of the presenting problem
• Do not convey reassurance
• Do not provide appropriate advice

Content of health care:

• Inconvenience, continuity, access, poor hygiene standards
• “Hotel” aspects of care
• Waiting times
• Culturally inappropriate care
• Competence
• Health outcomes

How to respond to dissatisfaction?

• Sometimes patients’ views are not reasonable or rational
• How much resource should be diverted to satisfying issues that arise in complaints
• What to do about “dodgy” professionals?

Question 11

Comment on the advantages and disadvantages of using patient-based outcomes to assess doctors’ performance

Answer 11

Advantages

• Ultimately care is provided to patients, so they should feel it is adequate

Disadvantages

• Patients may provide an objective view. As they are the patient, their view will naturally be a selfish one as they look to improve their own care.
• Not applicable on the national scale

Question 12

Describe what is meant by the Patient-Professional Relationship and list the 4 sociological approaches

Answer 12

• A very important component of the experience of illness
• Has become increasingly central to improving the delivery of health care
• Not just of sociological interest - also raises professional, legal and ethical concerns.

Sociological Approaches

1. Functionalism: emphases consensus and reciprocity
2. Conflict theory emphasises conflict
3. Interpretivism/Interactionism emphasises the meanings that people ascribe to social situations
4. Patient-centred/partnership models emphasise partnership

Question 13

Describe the Functionalist Approach

Answer 13

• Interested in how a relationship (doctor and patient) characterised by asymmetry could function so well.
• Patient is vulnerable; doctor is powerful - many taboos have to be broken for relationship to work
• Trust has to be based on abstract codes of conduct
• Medicine restores people to good health and by so doing restores social equilibrium
• The Sick role
• The Doctor’s role

Question 14

Describe the sick role according to functionalists

Answer 14

• Falling ill is a socio-cultural experience
• Although they may possess some knowledge of their condition, on the whole lay people don’t have the technical competence to remedy their situation
• The sick person is placed in a state of helplessness
• Rights and Dutires of the Sick Role: on falling ill, the sick person enters a social role which is circumscribed by specific rights and duties
  
  • Being ill presents itself as a legitimate reason to be freed of social responsibilities and obligations
  • The sick person is placed in a situation of dependence: their new social status demands the attention of medical care.
  • The sick person should wait to get well and not abuse their legitimised exemption from normal responsibilities
  • The sick person is expected to seek out the requisite technical help in the role of the physician and cooperate with them in the healing process.

Question 15

Describe the Doctor’s role, according to functionalists

Answer 15

• Doctor’s role as tending to sickness in society
• Characterized by certain norms and expectations (that we normally associate with professions)
  
  • Doctors should use skills for the beenfit of patients; act for the welfare of patients rather than their own self interests; be objective and non-discriminatory
  • Doctors granted intimate access to patients; autonomy status; financial reward

Question 16

What are criticisms of functionalist approach?

Answer 16

• Sick role not well thought out: some patients cannot get better (chronic illness); legitimate and illegitimate occupants of the sick role
• Assumes patients are incompetent and must have passive role
• Assumes rationalty and beneficence of medicine
• Doesn’t explain why things go wrong

Question 17

Describe Conflict Approaches

Answer 17

• By 1960s and 1970s, more critical views of medical profession were emerging
• Eliot Freidson rejected notions of legitimate authority and trust and replaced them with medical dominance and suppressed conflict
  
  • The doctor’s control is not the product of professional values or technical expertise alone
  • The doctor holds bureaucratic power - ‘gatekeeper’
  • Doctors have a monopoly on defining health and illness which they can exploit
  • The patient has little choice but to submit to the institutionalised dominance of the doctor
• Conflict Theory and “Medicalisation”
  
  • Lay ideas are marginalised and discounted
  • Medicine colonises areas previously in control of lay public, and can pathologise aspects of social life
  • Cultural iatrogenesis (Ivan Illich) - people become dependent on medicine, lose self-reliance and become sick.
  • Idea that “medicalisation” of childbirth has resulted in loss of control for women

Question 18

Describe criticisms of the Conflict Theories

Answer 18

• Is portrayal of patients and doctors as inevitably in conflict accurate?
• Patients are not (always) passive - can exert control through e.g. non-adherence, use of complementary therapies
• Patients may appear deferential in consultation but assert themselves outside of this
• Patients can seek to “medicalise” issues too.

Question 19

Describe the Interpretive / Interactionist Approaches

Answer 19

• Focus on the meanings that both parties give to the encounter
• Interested in patterns - how does order emerge through interaction? How do all of these things happen?
• Informal, unwritten rules govern almost every aspect of social life - may be much more important than formal rules

Question 20

Describe the Patient-Centred Models

Answer 20

• Aspiration that patient-professional relationship could be less hierarchical and more cooperative if patients’ views were taken more seriously.
• A shift away from traditional ‘professional-centred’ model toward a ‘patient-centred’ model
• Emphasis on more egalitarian relationship: professional and patient as equals
• Underpins many recent policy initiatives: “No decision about me, without me”

Question 21

Describe Patient-Centred Consultation and Shared Decision-Making

Answer 21

Patient-Centred Consultation

• Explores the patient’s main reason for the visit, their concerns and need for information;
• Seeks an integrated understanding of the patient’s world - that is, their whole person, emotional needs and life issues;
• Finds common ground on what the problems is and mutually agrees management
• Enhances prevention and health promotion;
• Enhances the continuing relationship between the patient and doctor.

Shared decision-making

• Both the doctor and patient involved in the treatment decision-making process; concordance
• Both the doctor and patient share information with each other.
• Both the doctor and the patient take steps to participate in the decision-making process by expressing treatment preferences
• A treatment decision is made and both the doctor and patient agree on the treatment

Question 22

What can patients contribute?

Answer 22

• Their concerns and priorities in relation to presenting problems
• Their personal perceptions of costs and benefits of alternative interventions to improve the problem.
• Complex judgements about the severity of their health problems and unwillingness to undergo risk, discomfort or other potential costs.
• Trade-off issues of survival at cost of quality of life.

Question 23

What are the challenges of shared decision-making?

Answer 23

• People who don’t want to share decision-making
• Unknown consequences of involvement - always good?
• Under what circumstances could/should the power of patients be limited?
• Who does final responsibility rest with?
• Is there time to achieve this?

Question 24

Distinguish between explanatory approahces and aspirational models of the patient-professional relationships

Answer 24

1. Functionalism - Explanatory
2. Conflict - Explanatory
3. Interpretive/ Interactionism - Explanatory
4. Patient-Centred / Partnership - Aspirational

Question 25

Define Complementary Therapies

Answer 25

• The practice of complementary and alternative medicine (CAM) involves any medical system based on a theory of disease or method of treatment other than the orthodox science of medicine as taught in medical schools” (British Medical Association 2008)
• In 1970s/80s provided as alternative to conventional healthcare, implying rejection of traditional medicine. Increasingly common to combine with traditional medicine, hence complementary rather than alternative.
• Covers very diverse range of practices
• Some have more relation to conventional medicine than others e.g.
  
  • Osteopathy, chiropractors (regulated)
  • Acupuncture - evidence-base growing
• Examples include
  
  • Acupuncture, aromatherapy, bach flower remedy, hypnotherapy, art therapy, reflexology, indian head massage

Question 26

Describe the use of complementary therapies

Answer 26

• Use is growing
• Prevalence of use of complementary and alternative medicine (CAM) by physicians in the UK: a systematic review of surveys (2012)
  
  • 13 studies of ‘low methodological quality’
  • Average prevalence of use - 20.6%
  • Average referral rate - 39%
  • Recommended by 46% of physicians
  • Up to one third of people with cancer / up to 50% of people with breast cancer (Cancer Research UK)
  • Most contact probably happens outside the NHS

Question 27

Why do people turn to complementary therapies?

Answer 27

• Persistent symptoms not relieved with conventional treatment
• Real or perceived adverse effects of conventional treatments
• Preference for a ‘holistic’ approach to their problem
• May feel require more time and attention (but are paying for it)
• Patients’ perspectives
  
  • Increasing availability and demand
  • High level of satisfaction report
  • Some common concerns: safety and consequence (and how you find a good reputable person), guilt e.g. fighting cancer, spending time and money and energy, denial, cost, social factors (cost implications => inequalities in ability to afford it),
• Doctors’ perspectives: there is a belief that some established forms may be of benefit but there are some common concerns:
  
  • Unqualified and unregulated practitioners
  • May risk missed or delayed diagnosis especially if somebody goes directly to complementary therapies before conventional treatments.
  • May refuse conventional treatment
  • May waste money on ineffective treatments
  • The mechanism of some complementary treatments is so implausible it cannot work

Question 28

What are the implications for medical practice? What is NICE’s perspective?

Answer 28

• The more people involved with one patient, the more complicated things get. The complementary practitioner is probably not going to be in contact with primary care unless it was a NHS referral. So traditional practitioners might not know what is going on with the complementary practitioner. This may be dangerous e.g. St John’s wart used in complementary therapy is known to make the contraceptive pill less effective.
• NICE’s perspective: NICE has recommended the use of complementary and alternative medicines in a limited number of circumstances
  
  • The Alexander Technique for Parkinson’s Disease
  • Ginger and acupressure for reducing morning sickness
  • Acupuncture and manual therapy, including spinal manipulation, spinal mobilisation and massage for persistent low back pain.
• E.g. Aromatherapy:
  
  • Controlled use of essentail oils which have therapeutic properties. E.g. basil is thought to relieve stress and improve depression and concentration. They are used topically or inhalation to relieve stress, ease tension, improve health and promote a sense of wellbeing. If applied topically, often combined with stress.
• E.g. Acupuncture: stimulation of special points on the body, usually by the insertion of fine needles. Workings of the human body are controlled by a vital force or energy called “Qi”. The acupuncture points are located along the meridians (channel) and provide one means of altering the flow of Qi. Acupuncture points correspond to physiological and anatomical features such as peripheral nerve junctions => trigger points and referred pain e.g. tender areas in neck and shoulder muscles which relate to various patterns of headache

Question 29

Describe the evidence-base for complementary therapies

Answer 29

• Complementary therapies must be held to the same account as all other (traditional) therapies - all evidence should meet the same standard.
• Systematic review: acupuncture for migraine
  
  • 22 trials with 4419 participants
  • Variety of comparisons e.g. ‘sham’ acupuncture, proven prophylactic drug treatment
  • Acupuncture is at least as effective as, or possibly more effective than, prophylactic drug treatment and has fewer adverse effects.
  • ‘True’ acupuncture vs ‘sham’ interventions data difficult to interpret
  • Conclusion: acupuncture should be considered as a treatment option
• Challenges in conducting trials
  
  • Resources - who will fund? (not big pharmaceuticals)
  • Trial of single intervention may not reflect reality
  • Multi-facted intervention trial very complex
  • Agreement to randomisation
  • Finding placebos/shams is challenging
  • Difficult to make double-blind
    *

Question 30

Is it an appropriate use of resources?

Answer 30

• Should we divert money towards therapies that don’t have an evidence base to support them?
• Should we spend money on aromatherapy for cancer patients or keep it for chemotherapy? What are the experiences for these patients?
• W

Question 31

Should NICE evaluate complementary therapies?

Answer 31

Arguments FOR:

• High public interest
• High GPs provide access
• Addresses inequalities in access/opportunity
• Should apply same standards to everything
• Stimulates more / higher quality research

Arguments AGAINST:

• Money in NHS is limited
• NICE has higher priorities
• Poor quality evidence

Question 32

Describe EBM and complementary therapies

Answer 32

• Issue of assessing effectiveness in ways consistent with EBM principles
• Is EBM relevant and applicable to complementary medicine?
• Whose evidence counts?
• What about evidence based on tradition and experience? e.g. 20 years experience and portfolio of letters saying ‘….you’re wonderful’.
• Resisting EBM
  
  • Is EBM the right way to judge the efficacy?
  • Argument that healing potential can’t be grasped by Western notions of rationalism (cannot be reduced to an RCT-type style design)
  • Some complementary therapies increasingly feel they are being forced to play the game by biomedicine’s rules and this is inappropriate. “I mean acupuncture and herbalism etc has survived almost 2,000 years, without this huge drive towards EBM).

Question 33

Describe the relevance of complementary therapies to you as doctors

Answer 33

• You may be able or asked to provide some access to complementary therapies.
• Different patients will have different beliefs/approaches
• Unlikely to be one universal answer
• Tomorrow’s Doctors says…you need to be aware of range of therapies available and why patients use them.
• Conclusions
  
  • much of the evidence about complementary therapies is anecdotal and/or qualitative evidence. Some quantitative data show clinical improvement but often comprise small numbers, poorly-powered studied and difficult to make any solid conclusions.
  • More research needs to be carried out, but will always be difficult due to funding, problems with trial methodology (blinding etc).