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The experience of living with or beyond cancer

A diagnosis of cancer and the experience of active treatment can give rise to a range of issues and challenges that can affect every aspect of people's lives (Corner and Wagland 2012). This includes continuing physical, emotional, psychological and spiritual distress which, in turn, negatively impacts on quality of life (Grunfeld et al. [119]). Cancer can also disrupt relationships and family life, working and financial stability (Arora et al. [10], Kim and Given [140], Kim et al. [141], Macmillan Cancer Support [158], Pitcealthy and Maguire, [227]). For many people, the consequences of the disease and its treatment may be permanent (Macmillan Cancer Support [158]).
Whilst many people are surviving following treatment for cancer, this is quite distinct from the experience of survivorship or living with and beyond cancer. For many, this is a life‐changing experience that begins on diagnosis but evolves over time. Survivorship will have both positive and negative aspects, simultaneously being unique to each individual but with universal characteristics. Most significantly, though, it will involve constant uncertainty, particularly after the completion of hospital‐based treatment (Doyle [93]).
In the UK there are about two million people living with or beyond a cancer diagnosis, including 1.8 million people currently living with cancer and at least one other long‐term condition such as heart disease or chronic kidney disease (Macmillan Cancer Support [161]). This number is expected to increase by approximately one million per decade until 2040 (Maddams et al. [168]). It has been established that people who are living with and beyond cancer, cancer survivors, have significant unmet needs and often experience worse health than those who have never had the disease (Armes et al. [9], Elliot et al. [97]).

The National Cancer Survivorship Initiative

In order to help and support the increasing number of people living with and beyond cancer and to offer them better care, the National Cancer Survivorship Initiative (NCSI) was set up in 2007 and has been complemented and updated by the recommendations of the >Independent Cancer Taskforce ([129]). The original NCSI report aimed to develop an understanding of the services required and to identify best practice (DH [76]). Its vision placed the focus on recovery, health and well‐being; the provision of individual and personalised holistic assessment; care based on a model of self‐management; follow‐up and support tailored to individual need; and patient‐reported outcome measures (DH [77]). This vision of a fundamental shift in care and support for those living with and beyond cancer resulted in the development of the recovery package (NCSI [185]).

The recovery package

The recovery package is designed to address the needs of people living with and beyond cancer at the right time and place and with the support of the right person and incorporates four distinct components (Figure 27.1):
  1. holistic needs assessment and care planning
  2. treatment summary
  3. health and well‐being event
  4. cancer care review.
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Figure 27.1  The recovery package. Source: Macmillan Cancer Support ([159]). © Macmillan Cancer Support 2013.
These components form the basis of a personalized plan of care for each individual affected by cancer and are designed to encourage the adoption of healthier lifestyles whilst facilitating supported self‐management. The recovery package should be a result of the effective partnership of the clinical team and the person living with cancer, having jointly decided on the most appropriate form of stratified care for the individual.

Stratified follow‐up and supported self‐management

Stratified care means that the clinical team and the person affected by cancer jointly decide on the most effective form of aftercare (see Figure 27.2). The three forms of aftercare are:
  1. Supported self‐management: this involves the provision of information on self‐management support programmes, signs and symptoms to look out for, details of scheduled tests and who to contact if help, information or advice is needed.
  2. Shared care: the person affected by cancer continues to have regular contact with healthcare professionals. This may be face to face or by telephone or email.
  3. Complex care management: intensive support is given to the person with cancer in order that they might manage their cancer and other conditions.
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Figure 27.2  Stratified pathways of care. MDT, multidisciplinary team. Source: NHS Improvement (2011). © NHS Improvement 2011. This information is licensed under the Open Government Licence v3.0. To view this licence, visit http://www.nationalarchives.gov.uk/doc/open‐government‐licence/

Person‐centred care

The success of initiatives such as the recovery package ultimately depends upon the adoption of person‐centred practices. This means that the needs and goals of people with cancer become central to the process of care with an emphasis being placed on what matters to them rather than what is the matter with them (Health Foundation [122]). This requires healthcare professionals to work with each person's definition of their situation and acknowledge that the practice of person‐centred care is predicated on supporting people to participate in decision‐making and to self‐manage their condition wherever possible. This requires that the person with cancer should be regarded as a partner rather than a passive recipient of care. In addition, healthcare professionals need to comprehend the psychosocial challenges faced by people living with and beyond cancer and what motivates them. The complexity of this is captured by Collins ([51]) when he stresses the importance of an interplay of philosophy, principles and activities. He lists the principles of person‐centred care as (Collins [51]):
  1. affording people dignity, respect and compassion
  2. offering co‐ordinated care, support or treatment
  3. offering personalized care, support or treatment
  4. being enabling.

The needs of those affected by cancer

Armes et al. ([9]) noted that people can have five or more moderate or severe unmet needs following treatment for cancer and that these needs can remain unchanged for 6 months. It is known that those with unmet needs are 20% more likely to visit their GP and can be expected to attend A&E departments twice as often as their healthy counterparts.
The evidence suggests that healthcare professionals frequently fail to appreciate the extent of the impact and effects of cancer and its treatment (Brennan et al. [28], Fallowfield et al. [102], Sanson‐Fisher et al. [246], Soellner et al. [259], Werner et al. [283]). Consequently, concerns are often unrecognized or inadequately addressed with the result that people living with and beyond cancer may fail to get the support that they need from the multiprofessional team. This ultimately results in poorer overall health and dissatisfaction with care (Demark‐Wahnefried et al. [69], McDowell et al. [172]).
The needs of those living with and beyond cancer are everybody's business (Brennan [28]) and in this spirit the NCSI ([185]) recommends that effective cancer care should commence at the point of diagnosis and should focus on:
  • information and support from diagnosis
  • promoting recovery
  • sustaining recovery
  • managing consequences
  • supporting people with active and advanced disease.
This theme has been included in Achieving World‐Class Cancer Outcomes: A Strategy for England 2015–2020 in which the Independent Cancer Taskforce ([129]) recommends that the recovery package and stratified follow‐up pathways should be rolled out expediently.

Holistic needs assessment and care planning

Holistic needs assessment (HNA) is an integral part of the recovery package. It can be defined as ‘a process of gathering information from the patient and/or carer in order to inform discussion and develop a deeper understanding of what the person understands and needs’ (National Cancer Action Team [NCAT] 2007). It incorporates the physical, psychosocial, spiritual and emotional well‐being of the person affected by cancer into the assessment process.
The HNA has been shown to be effective in identifying a person's individual concerns (Doyle and Henry [92]). Its value is that it:
  • identifies people who need help
  • provides opportunities for people to think through their needs
  • helps people self‐manage
  • helps teams to target support.

When to undertake a holistic needs assessment?

There are a number of key points when a holistic assessment of needs should be conducted. These coincide with significant milestones in the pathway where the person's needs might reasonably be expected to change:
  • around the time of diagnosis
  • at commencement of treatment
  • on completion of the primary treatment plan
  • at the point of recognition of incurability
  • at the beginning of the end of life
  • at the point at which dying is diagnosed
  • at any other time that the patient may request
  • at any other time that a professional carer may judge necessary
  • at each new episode of disease recurrence.
Because it might be difficult to establish a categorical link between high levels of distress and specific phases of the patient experience, assessments should also be undertaken at the request of the patient (NCAT [182]). Biddle et al. ([16]) suggest that the appropriate frequency of administration of HNA is the key to its success and this should be determined by the dynamic nature of distress and the context of care delivery. However, it should be noted that it may not be appropriate to conduct a HNA when the individual:
  • has severe mental illness
  • lacks capacity
  • elects not to participate.

Legal and professional considerations

The three primary considerations for healthcare professionals undertaking HNA are:
  • Ensuring autonomy: this refers to respecting the person's right to make decisions about their own lives without interference from the healthcare professional.
  • Ensuring confidentiality: this assumes that health information is given with the expectation that it will not be divulged except in ways that have been previously agreed upon.
  • Recognizing a duty of care: this refers to the legal obligation to take reasonable care to avoid causing harm.

Procedural considerations

The HNA can take the form of a face‐to‐face meeting or a telephone conversation. It should be conducted in a quiet, private area in which disturbance or interruption can be avoided and confidentiality can be achieved. It should be noted that the benefits of HNA can only be fully realized by allocating adequate time to the process (Biddle et al. [16]). The healthcare professional should open the session by introducing him/herself to the person living with and beyond cancer and ascertain how they would like to be addressed. The healthcare professional should outline the purpose of the HNA and gain verbal consent to proceed.
The HNA and care plans are commonly recorded on proformas which are supplied in the clinical setting. However, there is increasing interest in the use of electronic devices (e.g. tablets) for conducting these assessments. The advantage is that the eHNA allows the individual affected by cancer to complete the HNA questionnaire on a touch screen tablet. This information can then be sent to the healthcare professional through a secure website to facilitate the process of care and support planning. The London HNA tool is available in print and electronic formats. The tool can be accessed at http://www.londoncanceralliance.nhs.uk/news,‐events‐publications/news/2013/11/london‐wide‐hna‐now‐available/

Conducting a holistic needs assessment

Skilled practitioners should undertake HNA. They ought to have a good understanding of biological, psychological and emotional development and have an appreciation of how cancer can impinge on the needs of the population whilst possessing an intimate knowledge of the practice of caring and working with individuals.
The HNA can take many forms and the London Cancer Alliance (LCA) has developed a version in collaboration with London Cancer. The pan‐London tool includes a concerns checklist, a distress thermometer and a care plan. The concerns checklist allows the individual to specify which issues are of most concern to them.
In order to facilitate this process, the LCA has also developed a series of prompt tools (LCA [148]) for use during the HNA. These address a wide range of issues including fatigue, breathlessness, constipation, memory, worry and sexual consequences of treatment.
The top ten issues people with cancer of all types are concerned about (Macmillan Cancer Support [160]) are:
  1. worry, fear or anxiety
  2. tiredness/exhaustion or fatigue
  3. sleep problems/nightmares
  4. pain
  5. eating or appetite
  6. anger or frustration
  7. getting around (walking)
  8. memory or concentration
  9. hot flushes/sweating
  10. sore or dry mouth.
Some issues can be resolved following discussion and/or sharing of information. Simply allowing the person the opportunity and space to talk may, in itself, be sufficient to ameliorate any concerns. However, other issues may involve prompting or encouraging the individual to take a specific action themselves to address their concern or lead to intervention by a healthcare professional. Finally, there are issues for which the appropriate response must always be to make onward referral to specialist services. Following the discussion, a care plan is agreed that documents the agreed actions and provides a record of the discussion (Doyle and Henry [92]).
It should be noted that there may be occasions when the specialist services that are deemed appropriate are not available. This should be acknowledged and support offered because discussing the issue can, in itself, be helpful.
Members of the Consequences of Cancer and its Treatment collaborative group (CCaT) have developed a series of tips encapsulating concise, pragmatic advice for people who have had cancer treatment (Macmillan Cancer Support [154]). The ten top tips are:
  1. Discuss your needs with a healthcare professional at the end of treatment.
  2. See a copy of your assessment and care plan.
  3. Find out who is your ongoing ‘key contact’.
  4. Be aware of any post‐treatment symptoms.
  5. Get support with day‐to‐day concerns.
  6. Talk about how you feel.
  7. Take steps towards healthier living.
  8. Find out more about what to look for if you are worried about treatment side‐effects or the cancer coming back.
  9. Monitor your own health and keep up to date with ongoing check‐ups.
  10. Make suggestions based on your experiences of treatment and care.
Making an assessment is an opportunity to establish a connection with the person and their family and to start to develop ideas around collaboration and engaging motivation to self‐care. This requires the healthcare professional to shift slightly away from their traditional role of caring and treatment to one of nurturing and empowerment. This means involving and ideally enabling the patient to lead the conversation about their needs and the best solutions. A well‐executed HNA assessment should stimulate the patient to take action to help themselves with the support of healthcare professional and allied services.
Procedure guideline 27.2

Developing and actioning a care plan

Procedure guideline 27.3

Closure and follow‐up

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