This document discusses end of life care for substance users and former substance users. It notes there are many challenges to providing quality end of life care for this group, including negative attitudes, fears of addiction, undertreatment of pain, lack of screening and training for healthcare providers, and risk of diversion of medications. It emphasizes the importance of person-centered care, understanding an individual's needs and background, effective communication, and addressing barriers through strategies like screening, education, and support networks.

1. END OF LIFE CARE
FOR SUBSTANCE USERS AND EX SUBSTANCE USERS
FUTUREMOVES | May, 2017

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Introduction
End of life care, has many different elements to it, including palliative care, hospice,
care for the Carers, and much more, but underlying all the many aspects of care should
be dignity and respect. To maintain a elevated level of dignity and respect there must be
effective channels of communication that are multidisciplinary, catering for all aspects of
care, and also, inclusive of all those involved in the care and support of the individual.
Family, Carers, significant others, etc.
End of life care can still be, a taboo subject, in medical circles and understandably is not
a favoured topic for discussion. The progression of the medicinal profession’s primary
focus is to challenge death and continuously search for new and innovative ways of
keeping people alive, discussing death, is therefore somewhat awkward? Conflicting?
A relatively small percentage of patients, approximately 7%, have reported having any
discussions around end of life care with their GP’s. despite the relevance in relation to
their condition. Is there any ‘ideal’ timeframe to open up a channel of conversation, or a
specific timescale around when this discussion becomes an imperative element of future
care? We all die….right? So, how do you introduce the conversation, it’s a discussion
that needs to happen while the option, and ability, to put a comprehensive, person
centered care plan is available. And yet, it seems to be very rare indeed.
There is also an element of ‘confusion’ as to what constitutes palliative care, and when
does it become End of Life care, is there a significant difference, or are the core
fundamental practices basically the same.
Such a complex area of medical practice, has indeed many areas that present
numerous dilemmas, quandaries, family values and ideals may differ as emotions run
high, cultural and socioeconomic influences, religious beliefs and core values,
professional differences, social acceptance, political restrictions, financial restrictions,
the list is endless.
With the aging population and related needs set to rise by an estimated 25% over the
next decade to an estimated 2.8 million, and an expected future cut of 7.3% in funding
over the next year in social care funding, we are heading into desperate times. With the
primary interests firmly centered around disease prevention and subsequent policies
which target smoking, alcohol, hypertension, physical inactivity, as well as highlighting
the need for an increase in investments, there seems to be little concern, or productive
discussion around the inevitable. The health care system is facing it’s biggest challenges
yet in many areas, and the growing population becomes a major concern. Cuts to social
care also results in a shortage of trained professional Carers, which, then leaves the
responsibility on loved ones and family members, adding stress and tension to an
already highly emotional situation, rather than alleviating the pressure. There is also the
question of what is the recognized definition of a Carer?
At present an average of 40% of the National costings of long term care and support is
dependent on the savings and incomes of individuals and families, with discussions

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looming around means tested care and attention. The public health implications as well
as the economic and societal effect of the downward trajectory of the public sector and
the demands of the privatization of public services is yet another looming disaster area
already unfolding. With the estimated increase of need and the actual decrease in
resources, our health services are teetering on the edge of a breakdown as a result of
cuts that will not heal.
Workable solutions for home Carers might be tax allowances, or cash benefits, once a
definition is reached as to what constitutes a Carer. But, this is a highly unlikely
conclusion when we have a manifesto looming over us that suggests dementia tax and
asset based care allowances, and sees profit in the proposed statistical data over the
next decade. Coincidentally dementia is the fastest growing cause of disability, with a
predicted increase of 49% in people over the age of 65 by 2025. That’s an estimated
699,000 individuals with dementia care needs by 2025. Combined with additional
population trends in cardiovascular disease, mortality rates, etc, disability forecasts
present a major burden that demands increased resources, not further reductions.
Those aged 65 and over reached 10.4 million in 2015 with an expected rise of 19%,
12.4 million, predicted by 2025, backed by an increased life expectancy of 1.7 years to
86.8 years, this then breaks down to a quarter of later life likely to be spent living with
disability, 5.4 years after the age of 65.
Further information on this study can be found by following the link below….
http://www.thelancet.com/pdfs/journals/lanpub/PIIS2468-2667(17)30091-9.pdf

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END OF LIFE CARE: A DEFINITION
The World Health Organisation's definition of 'palliative care'
is "an approach that improves the quality of life of patients and their
families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and
other problems, physical, psychosocial and spiritual.
The National Council for Palliative Care (NCPC)'s guidance to
doctors defines 'end of life care' as care that helps people with advanced,
progressive, incurable illness to live as well as possible until they die. It
enables the supportive and palliative care needs of both patient and family to
be identified and met throughout the last phase of life and into bereavement.
It includes management of pain and other symptoms and provision of
psychological, social, spiritual and practical support. In their written
evidence, NCPC say:
“We do note though that if end of life and palliative care were better and
more widely understood, then this might enable better conversations
between health and social care staff and people about death and dying, as
well as services that meet their needs”

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END OF LIFE CARE: PRINCIPLES
Principle aims of End of Life care include:
• Place the person at the centre of the caring process.
• Consult and involve the person in decisions regarding their
care.
• Recognise that in addition to their physical symptoms,
people have emotional, social and spiritual needs that
should be addressed by a multi-disciplinary team.
• Maintain and enhance quality of life for individuals and
their families wherever possible.
• Provide bereavement support for families and carers after
someone has died.

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ENSURING PRINCIPLES ARE MET EFFICIENTLY AND
PROFESSIONALLY ALWAYS IN ALL SETTINGS
This is a core value that is relevant in all aspects of care and support. This
process can be best set in motion by collating a ‘one page profile’ that outlines
what is most important to the individual receiving care. What are their
expectations during the process, their fears, their concerns. Who is closest to the
individual and who might the individual perceive as being essentially involved in
the care process beyond family, significant others and home carers, recognizing
their needs as well as the individual receiving care is, at times a neglected area of
care. What are the significant needs of the individual, and, what kind of
environment is the individual experiencing in the home surroundings, socio-
economic values, highlighting significant aspects of the individual’s quality of life.
Fully understanding the individuals background, current situation, wants and
needs, concerns and fears, is imperative in formulating the best care and support
options designed specifically to meet the individuals needs. Every individual is
unique and therefore each care package must be equally as unique to ensure best
quality care and support which values individuality.
Ideally the fact that an individual is taken into care, a secure environment or quite
simply a medical facility where their needs can be met more efficiently, should be
accompanied by as many transferrable ‘home’ comforts as possible.
Maintaining consistency as much as possible, during inpatient period is
essential. However, many facilities that provide end of care support maintain
restrictive visiting hours as well as numerous other policies that, may cause
distress and/or discomfort all round.
Terminology has long been a barrier in numerous aspects of care with healthcare
professionals talking in medical jargon that some patients may nod their head to
but not understand, another cause of distress. When talking to a patient about
their care keep it simple and understandable and summarise to ensure that it was
fully understood to reduce negative impact, and misunderstandings.

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An example of a ‘one page profile’
In this example of a ‘one page profile’ Madge has been very clear around her
values and expectations. Any care plan from that point on should incorporate
these facts into provision as a basis on which to build an effective person-
centered care plan. involving Madge, family, any known carer’s, as well as a multi-
disciplinary team of professionals specifically chosen to suit Madge’s needs, and
any other relevant people who may be involved in her care. MADGES STORY

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PATIENTS WITH A LESS AFFLUENT BACKGROUND
If there is no supporting family and the socio-economic background is one that
reflects a negative environment involving homelessness, a history of substance
use, progressive underlying mental health condition, no family members or
recognized community connections, should the approach to care be any
different?
Bearing in mind that a full understanding of the human and civil rights is
paramount in all interactions and provision in the care sector, with such an
elevated level of importance attributed to adequate care as a means to alleviate
unnecessary risk, treatment grounded in equality and diversity is essential.
However, it is understandable that there may be additional needs, underlying
issues and co-morbid complications that may arise when formulating the best
approach to care for each respective group of individuals.
POTENTIAL BARRIERS TO EQUALITY WHEN INSTALLING PRINCIPLES OF
CARE, AND POTENTIAL SOLUTIONS TO REDUCE NEGLIGENT PRACTICE.
None of the above mentioned additional needs should present as problematic in
the care environment where a multidisciplinary approach is fully utilised, however,
attitudes towards care may affect the outcomes and provision significantly.
Addiction can have a double impact on end of life care. Caring for someone who
presents with an already existing addiction, and, the possibility of addiction while
taking specific medications to alleviate pain and other symptoms during
treatment. Both have similar barriers.
David Dellinger M.D. highlighted many potential barriers which were as follows….
1. Attitude towards Substance use has the potential to impact care at multiple
levels. With negative attitudes being apparent in both significant others
and professionals alike.
2. Patients can often fear addiction resulting in them refusing to take
necessary medications.
3. 71% of cancer patients will not take medications as prescribed, often
skipping doses, or not taking them at all. The fear of dependence and/or
addiction is so great. Family can also be a contributing factor to this by
airing their views, at times, regardless of the individual’s personal views,
or, in support of the individual’s views.

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4. Up to one third of patients involved in palliative/end of life care under-
report symptoms and undertreat pain due to fear of developing an
addiction. Making pain management and symptom control a delicate
operation. The number who refuse medications for fear of relapse is
currently unknown but is potentially high.
5. 40% of spouses are against the initiation of opioids into the patient care
regime
6. 25% of caregiver’s underestimate, and/or minimise symptoms because
they fear addiction.
7. There are sadly numerous healthcare providers who have heavy biases
against ‘addicts’ that can also greatly impact care.
8. Nurses have often been reported to discount pain reports and undertreat
pain in patients who have a record of substance use, or even if there is
suspicion of previous or current substance use.
9. AIDS Patients in receipt of end of life care, who with a history of
intravenous drug use have been reported to be given inadequate symptom
control at least 15% of their time in care.
The concerning aspect around this is that evidence shows that 28% of those in
receipt of end of life care and in the later stages of terminal cancer misuse
alcohol. And in addition to this fact around 25% of those entering inpatient
hospice were found to have existing alcohol problems.
1. Research showed that Palliative Oncologists failed to recognise any
negative consequences of untreated addiction and related issues, which
could result in fatality.
2. Further research showed that relevant screening tests to detect substance
use were rarely done, and when they were and revealed positive results,
positive steps to address the underlying issues that were then relevant to
provide appropriate care were only implemented 14% of the time.
3. No consensus or standards exist for routine screening or monitoring of
patients, and or families.
4. A subsequent survey revealed that in one facility only 43% screen the
patient for substance use, 30% screen the family members and 29% screen
for diversion of medications. The same survey revealed that less than half
were adequately trained in matters relating to addiction.

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ADDRESSING DIVERSION AND RELATED ISSUES SURROUNDING
MEDICATIONS
Diversion of medications in this area of care can present numerous concerns and
risks. In relation to the medications most often used to alleviate pain. Relief from
breakthrough pain in cancer patients where fentanyl is the primary drug of choice
to be administered is of particular concern considering the high profile it is
receiving in relation to the current global opioid crisis, and its recent appearance
in UK and Ireland. Although the recent deaths were attributed to clandestine
laboratory production, this does not alleviate the potential risks of medicinal
products being abused, or misused, numerous internal reports within the NHS
dating back as far as 1998 have shown that this particular drug is extremely high
risk and should be contained and monitored in a more stringent manner. This
should undoubtedly be high priority and monitored closely in a medical facility
and when prescribing take home fentanyl, there should be a patch for patch, or
similar process in place to reduce the risk of diversion in the community, to
minimise potential risks of further fatalities.
Recent reviews medications that would primarily be effective in pain relief,
minimising issues relating to possibilities of addiction, reduction of withdrawal
syndrome and increased interactions in everyday functions addiction raised the
possible introduction of buprenorphine as an alternative to already existing
medications. More recently a buccal version of buprenorphine, brand name
Espranor has been released on the market. Espranor is rapid dissolve,
approximately 8 seconds, does not involve needles, and has a greatly increased
bioavailability in respect of other generic versions of the medication. It is ideal for
use in the frail and elderly with a half life that is longer than methadone, equally as
effective, but a more rapid onset due to the route of administration.
This also addresses one of the aforementioned biases held by a number of
medical professionals around injectable medicines, and, associated fears of
needle stick injury increasing the risk of contracting blood borne viruses. Next to
IV/IM or subcutaneous administration, buccal is by far the best option of
administration route. Requiring minimal maintenance and monitoring throughout
the individuals care, and, at the same time minimizing negative adverse effects.

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VARIOUS STRATEGIC APPROACHES THAT COULD BE IMPLIMENTED
• Clear and direct models of care which identify potential risks and possible
barriers to care stored on a National database for easy access. Including
personal testimonies collated from carers, family members and nurses
involved in end of life care process showing what provision was most
effective. This would provide an essential guide to continued care based on
best practice. This would also provide a space where innovative care
approaches could be showcased, dispersing the individuality that at
present is disparaged. Each end of life care process is unique for each
individual but building a database that showcases the most effective
approaches used by caregivers could ensure that the approaches that work
are widespread, prioritised when discussing care plans and utilised where
applicable.
• Clearly defined barriers to achieving these models of care, specifically
ensuring that relevant training becomes a necessity in any all
professionals to adequately address any related issues, recognise signs of
abuse and potential abuse of substances, and all other issues surrounding
historic and resent concerns around addiction. Develop an understanding
of the risks involved in inappropriate treatment of addiction and withdrawal
syndrome through training and education.
• Regular screening of both patient and family, and in addition screening for
diversion of high risk substances. This must not be used against family
members who may possibly test positive, it is not a tool for discrimination,
it is a tool for safety and to ensure relevant steps are in place to reduce any
additional, unnecessary risk.
• Highlight and implement clear and direct strategies for dealing with related
issues that may affect outcomes causing discomfort and distress to family
and individual.
• Ensure there is effective support networks available for family and friends
and caregivers. Making this information accessible at all times throughout
care provision. Including bereavement Counceling, incorporating preparing
for loss, dealing with actual loss and intense, continuous, open ended
aftercare and support towards recovery from bereavement.
All information could be recorded on a National database enabling easy access
and efficient monitoring of all outcomes and evaluations, to inevitably improve
practice and care thus enhancing outcomes for all those involved in the process.

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