End of life treatment and care: good practice in decision making
PAMIS is a voluntary organisation that supports people with profound and
multiple learning disabilities (PMLD), their families and carers.
People with profound and multiple learning disability have profound learning
(intellectual) disability, the majority will have physical disability (lifelong
wheelchair users), sensory impairments and very complex health care needs.
Health difficulties include: severe epilepsy; chronic respiratory difficulties;
gastro-intestinal difficulties; problems with eating and drinking, and many
more. Their communication is usually non-verbal and often difficult to
interpret. All people with PMLD are deemed to come under the ‘Adults with
Incapacity (Scotland) Act 2000’ with regard to decisions on their end of life
health needs and therefore Welfare Guardianship should be in place once the
person reaches sixteen.
It is well documented that individuals with PMLD have greater and more
complex health needs than the rest of the population and that they experience
many inequalities within their health care provision (NHS Health Scotland,
People with intellectual (learning) disabilities are also enjoying increased
longevity with changing patterns of morbidity and mortality. With longevity the
prevalence of age-related illnesses is rising, and with that a growing need for
palliative care (Tuffrey-Wijne, 2007)
The common causes of mortality in people with PMLD are different to those of
the general population. The most common causes of death for this group of
people are respiratory failure, which relates to pneumonia and aspiration,
swallowing and feeding problems, and gastro-oesophageal reflux disorder.
This is followed by cardiovascular disease caused by congenital factors rather
than damage of the blood vessels. Cancers are most commonly stomach and
oesophageal, due to reflux disorder (NHS Health Scotland, 2004). However,
at present, people with PMLD are excluded from receiving good quality
palliative care as most of the specialist services for palliative care are directed
at people with more common forms of cancer. Rarely, if ever, would people
with PMLD who are at end of life for respiratory failure or cardiovascular
disease be offered palliative care.
From our experience at PAMIS as well as other voluntary organisations,
notably Mencap (see Mencap 2007) individuals may experience excellent
healthcare provision throughout their life including end of life care, but many
receive poor quality health care, in both the acute and community settings,
resulting in a stressful end to their life for themselves and their family
How important do you think the following factors are to good end of life
A. Controlling the patient’s pain and distressing symptoms
People with PMLD have little or no verbal communication, so measuring pain
can be very problematic resulting in diagnostic overshadowing and distress
for the patient and at times an avoidable death. Difficulties in understanding
the individual’s communication can also affect them both psychologically, and
Presently people with PMLD may not receive interventions that could prolong
or maintain their quality of life in the community at an early stage of
respiratory failure, such as oxygen supplementation, non invasive ventilation,
PAMIS believes it is extremely important for appropriate training to be
provided, and that PMLD awareness should be part of that training. For
example, care staff, medical staff and families need to be trained in methods
to measure and access pain and distress in people that cannot communicate
conventionally. The Disability Distress Assessment Tool - DisDat is a tool
designed specifically for this purpose. However, there is a need for the
effectiveness of this tool to be independently evaluated.
B. Effective co-ordination between the people providing care across
all the settings where the patient receives care
As previously stated, PAMIS believes that all people with PMLD should be
linked to the palliative care services from diagnosis. This would enable
continuing links to all the individuals’ services by the palliative care team on
an ongoing basis. This linking would then enable a smooth pathway for the
introduction of the end of life plan to be put into place when palliative care
becomes necessary. The various professionals involved with the individual
with PMLD will all be aware of the future plans with a clear pathway in place,
and this can be an ongoing item to be discussed at all reviews.
C. Emotional, psychological and/or spiritual support for the patient
and their family, carers and friends
Some young people with PMLD are linked to the Children’s Hospice
Association Scotland (CHAS), if they have been diagnosed with a life limiting
condition. This service provides the families and the young people vital
support throughout their lifetime, especially at the end of their life.
Unfortunately not all families across Scotland receive this provision.
PAMIS recommends that all families who are caring for a child with PMLD
should be offered the link to CHAS and if the child survives into adulthood,
there should be a transitional link to the local palliative care team.
Adults with PMLD should also have access to palliative care services (as
relevant) and this should form part of their individual Care Pathway/Individual
Health Care Plan. The spiritual needs of people with PMLD are frequently
overlooked especially when they have many complex health needs. This
should be part of the individuals Care Plan: Individual Care Assessment Plan.
PAMIS recommends that existing Palliative Care Strategies such as the
Liverpool Care Pathway that provides advice on spiritual support should be
applied to people with PMLD were appropriate.
D. Early discussion with the patient about their condition and their
wishes about future treatment and care
PAMIS would want to see an end of life plan incorporated into the individual
with PMLD’s Individual Life Care Plan/ Health Care Plan, and that the
person’s family carer or lead carer would be recognised as a true partner in
the decision making and care giving process when drawing up the end of life
plan. It is important that Welfare Guardianship is in place once the person
with PMLD is sixteen so that the Welfare Guardian, whether family member,
lead carer or independent citizen advocate, are recognised as having a legal
right to take part in this process.
E. Good communication between the healthcare team, the patient
and their family and carers
As previously stated above, it is vital that the family carer/ lead carer, Welfare
Guardian are recognised as true partners in the process, and can speak to
the professionals on behalf of the individual with PMLD. They must be fully
involved in the decision process and consulted throughout the end of life
planning and journey.
Medical Practitioners must be knowledgeable on the Adults with Incapacity
(Scotland) Act 2000, so that they can understand the issues around incapacity
and support the individual and the family appropriately.
The plan must be fluid so that it can take into account changes in the
individual’s medical/ health needs and PAMIS recommends that family carers
(Welfare Guardians) should put their specific wishes in writing. It is preferable
to complete this in a calm and planned way, and not in a state of stress and
anxiety. These should include issues such as resuscitation, intubation and
continuing nutrition, and that family carers can update any wishes to meet the
changes in the individual. PAMIS recommends regular reviews with all
professionals involved in the care team, including the palliative support, and
the family to ensure any changes will be discussed and noted in the end of life
What other factors do you think are important and why?
PAMIS would wish it to be recognised that people with PMLD frequently die at
a relatively young age when there may be young siblings living within the
home, who have to deal with living through the end of life situation of their
brother or sister. We would wish to emphasise the importance to follow a
sensitive and family orientated view of end of life planning for young people
with PMLD. Young siblings emotional and psychological needs must be taken
into account along with the individual with PMLD, as many will have acted as
young carers to their brother or sister, and may continue to do so up to the
Good Communication and Co-ordination
PAMIS would recommend that there should be a professional lead to oversee
the end of life Plan to make certain that all the appropriate professionals
within the team supporting the individual with PMLD are up to date on any
changes, and who can ensure that communication is ongoing between the
family and supporting professionals. This should be a lead medical
practitioner involved in the individual’s health care.
PAMIS recommends that appropriate documents should be in place for
people with PMLD when attending hospital such as an Acute Admissions
Document and Personal Passport. Within these documents it should be noted
that there is an end of life Plan in place. It is important that hospital staff are
trained and knowledgeable about these documents so that they can recognise
the importance of them when providing care.
PAMIS recommends that the General Practitioner for people with PMLD
ensures that NHS24, hospital, and ambulance services are kept fully informed
of relevant information held within the end of life Plan
Training would ensure that individuals with PMLD receive an equitable quality
of end of life care. The sharing of good practice across all NHS Boards will go
a long way to ensure people with PMLD will receive the same standard of
care at the end of their lives as other citizens.
What are the main obstacles to good communication and co-ordination?
People with PMLD have many professionals involved in their care, and their
Individual Care Plan/ Person centred Plan should support those caring for the
individual. They should also have regular health care reviews to ensure that
information is discussed and shared. The end of life Plan should become part
of the review process once it identified as appropriate and is in place. PAMIS
would wish to see a care pathway to ensure that all the professionals are
aware what their role and responsibilities are within the individual’s health
care plans, including the end of life Plan. To not have this in place will lead to
poor communication and coordination. PAMIS believes that if the relevant
care documents (as highlighted above) are in place and are robust, and a
clear care pathway is in place then good communication between the
individuals family (Welfare Guardian) and other relevant professionals should
be satisfactory to ensure a good quality of end of life care.
If there is a lack of appropriate training around the needs of people with
PMLD and sharing of good practice as highlighted above, then this can impact
on the effectiveness of communication and co-ordination.
Care after death
F. Be professional and compassionate when confirming and
PAMIS advocates that people with PMLD should have an ongoing link to the
palliative care services from diagnosis, so their death should be in a place
where the family carer (Welfare Guardian’) will previously had links i.e.
Hospice, or at home. The medical practitioner that will pronounce the death
should be well known to the family. If the individual with PMLD dies in a
hospital setting, then the family and individual with PMLD should be supported
by a named medical practitioner on the ward, and the death pronounced in a
G. Ensure that the patient’s body is treated with dignity and respect,
and wherever possible, in accordance with the requirements of
the patient’s faith or beliefs.
PAMIS believes that the family carers (Welfare Guardians) wishes should be
taken into consideration, and that any requirements of the family’s beliefs be
respected, Some family carers may wish to prepare their son or daughters
body as it will be the last time that they will perform what has been a lifetime
of personal care. This need should be recognised and respected, and dealt
H. Answer any questions that the patient’s family may have about
the patient’s care or the information shown on the death
PAMIS advocates the good practice by medical practitioners to spend time
with the family and answer any questions they may have about the care and
death of their son or daughter in a planned meeting. PAMIS would
recommend that the family put any questions in writing and prepare for the
meeting, so that a full dialogue can take place which may help the grieving
MENCAP (2007) Death by Indifference. London: MENCAP
NHS Health Scotland (2004) Health Needs Assessment Report: People with
Learning Disabilities in Scotland. Glasgow: NHS Health Scotland.
Tuffrey-Winje, Irene (2007) Palliative Care for People with Intellectual
Disabilities. Maastricht, DataWyse B.V.
PAMIS July 2009