OTHER NOTES:
I'd better make a note of the entire text 'just in case'...go figure:
Consent to Cancer Screening
The Mental Capacity Act also makes it clear that making a decision
that might be considered unwise should not be taken to mean that the
individual lacks the capacity to make that decision.
A person lacking the mental capacity to consent may have made an
advance decision to refuse participation in a screening programme or
associated tests or treatment at a time when he or she did have mental
capacity. A valid and applicable advance decision must be followed
in the same way as a contemporaneous refusal made by a person with
capacity.
If an individual permanently lacks the mental capacity to consent to
screening, a decision may be made on his or her behalf in that person’s
best interests. Best interests go beyond medical interests, and include
factors such as previous wishes or beliefs (that is, before a loss of capacity
to express these), current wishes, general well-being, and spiritual
or religious welfare. There is no requirement to have more than one
person make a best interests decision; however, it is expected that the
person making the decision will have taken steps to ensure that it has
been arrived at appropriately. In many cases, the person making a best
interests decision will be a carer – either a professional carer or a family
member, partner or close friend.
Making a best interests decision must involve a consideration of all
relevant factors. These may include:
• the degree of risk of the condition being screened for
• the nature of the tests, and how the individual may respond to
them
• the implications of an abnormal test result, including further
investigations and treatment
• any previous opinions regarding screening held by the individual
before capacity was lost, particularly previously expressed support
for or refusal of screening
• the opinions of people that know the individual well (including
family, friends, and other carers) as to what they feel the individual
would want.
A best interests decision must not be based on what the person making
the decision would necessarily do, and it must not be based on what is
easiest for the carer or screening staff. It should be remembered that the
person responsible for making the decision to proceed with (or withhold)
screening in a person’s best interests must be able to justify the
decision. A carer who has made a best interests decision should have
considered all the relevant factors, and may benefit from speaking to
screening staff in order to be fully informed about the screening process
and its implications for the individual concerned. Even if a carer has
decided in favour of screening as a best interests decision, the screening
practitioner should be able to debate that decision if he or she feels that
there are valid reasons why the screening procedure may not be in the
individual’s best interests.
5.2 Screening under a best
interests decision
Consent to Cancer Screening
NHS Cancer Screening Programmes 14 January 2009
Screening practitioners should adhere to the requirements of the Mental
Capacity Act 2005. Further guidance about all aspects of the Act can
be found in the Code of Practice, available on the Office of the Public
Guardian (OPG) website at www.publicguardian.gov.uk/mca/code-ofpractice.
htm.25 A copy of the OPG guidance for health care practitioners
needing to make best interests decisions can also be found on the OPG
website (www.publicguardian.gov.uk) and at www.cancerscreening.nhs.
uk/publications/making-decisions-opg603-1207.pdf.26
Any best interests decision to screen or withhold screening should be
clearly documented, including detailed information about who made the
decision, and why the decision was considered to be in the individual’s
best interests.
It is important for screening staff to recognise that a person who lacks
the mental capacity to consent to screening should not be permanently
removed from a screening recall programme unless a best interests decision
to do so has been taken on his or her behalf. In most cases, the least
restrictive option is for that person to remain in call/recall and receive
screening invitations at routine intervals. The invitations can be considered
and accepted or declined on each occasion.
In exceptional circumstances, a care team may decide that it is in the
best interests of a person who lacks mental capacity to withdraw from a
cancer screening programme. Screening staff should be satisfied that the
best interests decision has been reached ain accordance with the Code of
Practice (see section 5.2). The person making the best interests decision
to cease a person from screening should be aware that the person can
be reinstated onto the screening list at any time (if still within screening
age) if circumstances change and screening is then considered to be in
the person’s best interests.
The Mental Capacity Act provides for decisions about the health care
(including participation in screening) of a person who lacks mental
capacity to be made by a legally accountable decision maker only if he
or she has been authorised to do so. This may be someone nominated
under a Lasting Power of Attorney, or a deputy appointed by the Court
of Protection. Decisions made by them must be accepted as if they were
made by the person lacking capacity. However, those decisions must be
made in accordance with the same processes of any other person acting
in the individual’s best interests.
Some people who need help to make an informed decision about bowel
cancer screening; for example, people with a learning difficulty may also
need additional help to use the FOBt kit, because the test is completed
by the individual at home rather than screening being carried out by a
screening practitioner.
5.3 Ceasing in a person’s
best interests
5.4 Lasting Power of
Attorney
5.5 Additional guidance:
bowel cancer screening
NHS Cancer Screening Programmes 15 January 2009
Consent to Cancer Screening
If a carer is making a best interests decision for a person who lacks the
mental capacity to make his or her own decision about bowel cancer
screening, the carer must have received and understood information
relating to the entire screening process, including the possibility of further
investigations. A best interests decision must not be based on the
completion of the FOBt kit alone, but must also consider the implications
and risks of colonoscopy should the screening participant receive
an abnormal screening test result. If it seems likely that an individual
will be unable to tolerate or comply with the colonoscopy procedure, an
alternative method of investigation, such as imaging, may be offered.
A carer should seek advice from the NHS Bowel Cancer Screening
Programme freephone helpline (0800 707 60 60) before making a best
interests decision about bowel cancer screening. A statement to this effect
is included in the screening invitation letter.
A copy of the OPG guidance for carers needing to make best
interests decisions can also be found on the OPG website
(www.publicguardian.gov.uk) and at www.cancerscreening.nhs.uk/
publications/making-decisions-opg602-1207.pdf.27
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