Unit 14, Task 4 Resub
P11- Describe strategies and frameworks available to support individuals in the terminal stages of
long-term physiological conditions
There are many strategies and frameworks to support individuals who are in the terminal stages of an
illness.
One strategy that may be used in the end-of-life care of an individual with multiple sclerosis is palliative
care. Palliative care involves making the individual as comfortable as possible, by controlling pain and
symptoms from the condition. Palliative care involves a holistic approach, meaning the care must be
adapted to all their needs not just the needs because of the illness and symptoms. End of life care is
given to individuals who are expected to die within twelve months. Medication will be needed to help
an individual manage the pain they experience. There are different ways this can be done. It can be
done through syringe drivers. Syringe drivers deliver medication slowly via a battery powered pump that
travels through a small plastic tube under the skin. They are often used for individuals who are unable to
swallow tablets or liquid, either because of the condition or because they are in an unconscious state, so
are unable to take medication any other way. “The aim of palliative care is to help the individual and
their family to achieve the best quality of life, offer a support system to help the family cope during an
individual’s illness, and provide support for the individual to live as actively as possible until their death.”
(Ferreiro Peteiro et al., 2016) Palliative care aims to improve the quality of life for patients and their
families, by taking into account any challenges that are linked with the condition, this may physical,
psychological, social or spiritual challenges. Palliative care can be given to someone early in the hope of
reducing unnecessary hospital admissions, this benefits the individual as they are able to stay in their
own home, and can help them feel better as they have their own belongings around them for comfort.
Palliative care can take place at home, or the GP and MS team can refer the individual to a hospice to
receive this care, if they feel this is necessary. Palliative care involves a mix of pain relief, symptom
control, complementary therapies, counselling, respite care and practical support. Palliative care can be
used both early on in the condition, in order to prolong life and manage symptoms, and in the late
stages of the illness.
One framework that may be used in the end-of-life care of individuals with down syndrome is the
mental capacity act 2005. This piece of legislation aims to safeguard and empower individuals who may
be unable to make decisions for themselves. There are five principles covered in the Mental Capacity
Act. The first is that there must be a presumption of capacity. This means that it must be assumed that
the individual has capacity, unless it is proved that they do not have capacity. Every adult has the right
to make their own decisions and must be assumed to have capacity to do so unless it is proved
otherwise. A care worker must not assume an individual cannot make a decision for themselves just
because they have a certain condition or disability.
The second is that the individual must be supported to make their own decision. This may mean that
information may need to be presented to them in an alternative way, so that they can understand what
is being explained to them. A person must be given all possible help before anyone treats them as not
being able to make their own decisions. For example, this may include presenting information in a
different format for those with physical or learning disabilities.
, The third principle is about unwise decisions. The individual has the right to make their own decisions
even if this is seen as unwise by others. Having unusual preferences, values and beliefs must not be seen
as lacking mental capacity. An individual may make what others may see as an unwise decision; they
should not be treated as lacking capacity to make the decision. People have the right to make what
others may see as eccentric or unwise decisions. Everyone has their own preferences, values and beliefs,
which might not be the same as others; they cannot be treated as lacking capacity for thinking
differently.
The fourth principle is ensuring that decisions are in the individual’s best interests. The individual should
be involved or if they are likely to regain capacity the decision should be delayed where possible. Actions
or decisions taken under this act on behalf of a person who lacks capacity, must be done in their best
interest. Care workers should provide reasons to show why a decision has been made and it is in the
person’s best interests. They should try and include the person in some way, or consider if the decision
could be put off until the person regains capacity.
The fifth principle is ensuring that the less restrictive option is used. Anything that is done for the
individual who lacks capacity must be done with the least restriction on their basic rights and freedoms.
A carer or advocate should make sure that the decision does not stop the person’s freedom more than
needed. It should not restrict their basic rights.
“The Mental Capacity Act 2005 sets out the rights of those who lack the mental capacity to make a will,
to have a will executed on their behalf and to apply to manage the property, money and possessions of
an individual who has died.” (Support individuals at the end of their life, n.d.) This enables the
individual to still have control over their money, property and possessions, even if they do lack mental
capacity. However, they would need to be supported to do this.
“This Act also sets out how to make an Advanced Decision to Refuse Treatment legally binding, in case
an individual is unable to communicate the treatment they do not want to receive such as life support or
CPR.” (Support individuals at the end of their life, n.d.) This ensures that an individual still has decisions
made with their best interests in mind.
