Introduction distressing symptom is intractable. This case study reviews

 

Introduction

 

The aim of palliative care is to achieve
the best possible quality of life for the person with a life-limiting illness
and to provide support for their family and carers. A key role in this is
providing adequate relief of pain and any other distressing symptoms. Very
rarely a situation arises where despite the best possible analgesia, adequate
relief of pain is not achieved. In this context the potential for using
palliative sedation may be considered. The decision to prescribe palliative
sedation is one which should only be reached after all other options have been
exhausted and it has been clearly established that the distressing symptom is
intractable. This case study reviews the management of a patient who required
palliative sedation and the various steps and processes that should be
implemented prior to this intervention being used. It also aims to address the
important differences between palliative sedation and euthanasia as there are
many misinterpretations of what palliative sedation actually is in the
literature and amongst medical staff and patients. It also aims to ascertain
through a review of the available evidence whether palliative sedation hastens
death.

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Case presentation

 

LW, a 63 year old woman with
metastatic rectal cancer first diagnosed in 2010 was admitted electively to the
palliative care unit for an intrathecal pump change on September 5th
2017 when I met her for the first time.

 

LW was initially diagnosed with
rectal cancer in 2010. At this time she had no past medical history, was
allergic to codeine and was not on any regular medications at diagnosis. She
was a non-smoker and seldom drank alcohol. She lived at home with her husband
and was fully independent in her ADLs. She was working as a nurse prior to her
diagnosis.

 

She initially had a primary
surgical anterior resection and subsequently commenced chemotherapy (Folinic
acid, Fluorouracil and Oxaliplatin). In 2011 she had surgical resection of
liver metastases. Following these treatments she had a long period of apparent
remission however, PET scans in 2013 revealed avid nodules in the right upper
lung lobe and in the pelvis which were suspicious for metastases. She declined
further surgical intervention for these lesions instead opting for radiotherapy
to the pelvis.  

 

She was first referred to the
palliative care team in 2015 due to pain in her sacrum and vulva. She was commenced
on Panadol osteo, 5mg Norspan Patch and PRN morphine liquid. She was also
reviewed by the Medical Oncology team after repeat CT scans showed progression
of metastatic disease in the pelvic area. They recommended commencement of
palliative Erbitux which she completed with no issues.

 

Despite the palliative chemotherapy
the pain in her pelvic area continued to increase and she was offered further palliative
radiotherapy which she initially declined. The palliative team switched her
from a buprenorphine patch to a fentanyl patch and commenced her on methadone
and pregabalin. Despite the changes to her medications her pain continued to
increase so in mid-2016 she agreed to undergo the palliative radiotherapy. This
gave good pain relief but, unfortunately, it only lasted a couple of months. Despite
amitriptyline 20mg nocte and pregabalin 25mg BD, she had increasing neuropathic
pain and required review in the palliative OPD. At this appointment her pregabalin
was increased to 50mg BD. On review six weeks later in clinic, she reported
increasing neuropathic pain. Her pregablin was therefore increased to 100mg BD
with advice to her GP to increase this to a max dose of 300mg BD if there was
an incremental improvement in her pain.

 

 

Unfortunately at her next OPD
review her pain was so severe she required admission to hospital. During this
admission she was seen by the acute pain team and an epidural catheter was
inserted for pain management. Through this she was receiving fentanyl and
ropivicaine, in addition to her oral methadone 5mg mane, pregabalin 150mg BD,
amitriptyline 25mg nocte, dexamethasone 2mg mane and a syringe driver with Buscopan
30mg, haloperidol 2.5mg and midazolam 2.5mg. Due to the success of her epidural
pain relief an intrathecal pump was inserted and commenced mid-December 2016.
She had a prolonged hospital admission to optimise her analgesia and was
discharged home at the end of March 2017 on an intrathecal infusion of 77mcg
morphine per day, regular oral methadone 10mg BD, pregabalin 150mg BD and amitriptyline
35mg nocte, with as required hydromorphone 2 – 8 mg/day and buccal fentanyl
200mcg up to twice per day.

 

Following discharge she was looked
after at home by her husband and had a very attentive General Practitioner who
closely liaised with the palliative care outreach team and pain specialists.
Despite ongoing complex pain management issues LW and her husband remained
optimistic and drew a lot of strength from their strong religious beliefs. They
both valued the time spent at home and despite her decline in function and the fact
that she was now bed-bound, continued to find joy in life. During this time
they also sorted out her legal will and she appointed her husband as her
enduring power of attorney and completed an acute resuscitation plan with her
doctor,

 

She was electively admitted again
in September 2017 for an intra-thecal pump change. This admission whilst
primarily to change the pump was also organised to provide respite for her
husband who was finding it increasingly difficult to look after his wife at
home. On admission it was clear that her pain was inadequately controlled and
she was commenced on a ketamine infusion. When reviewed by the pain specialist
the following day she was in severe distress and crying with pain. She was
therefore given a bolus through her intra-thecal pump of 6mg ropivacaine and
224mcg morphine. Her pump was refilled the following day with ropivacaine
12mg/day, morphine 886mcg/day and clonidine 53mcg/d. The ketamine infusion was
ceased after three days as it was felt to have made no difference to her pain. Unfortunately
despite the changes to her analgesia her pain remained poorly managed with her
crying and screaming in pain whenever she was alert enough to do so.

 

The nursing and medical staff during
this time noticed differences in her level of alertness and ability to swallow
suggestive of entering the terminal phase of her disease. She was also noted to
be delirious and confused. The Consultant looking after LW requested an
independent review by a colleague palliative care physician. Following this a
case conference was held and it was agreed that LW fulfilled the criteria (imminently
dying/within the last 1-2 weeks of life, refractory symptoms causing
intractable suffering) for palliative sedation. Her husband was given lots of
supportive counselling from all the staff including the social worker on the
team. A family meeting was held where her husband and the rest of the family
were updated and educated on what to expect once terminal sedation was
commenced. LW and her family consented to palliative sedation and it was
commenced on the 12th of September 2017. The drugs used to
facilitate this were given via syringe driver and included levomepromazine 25mg
and midazolam 40mg. She was also charted midazolam 5-10mg subcutaneously as
required for agitation. She died the day after palliative sedation was
commenced, comfortably, surrounded by her entire family.

 

 

 

Discussion:

 

The definition of ”palliative
care” agreed at the National Quality Forum reads;

“Palliative care refers to patient-
and family-centred care that optimizes quality of life by anticipating,
preventing, and treating suffering. Palliative care throughout the continuum of
illness involves addressing physical, intellectual, emotional, social, and
spiritual needs and facilitating patient autonomy, access to information, and
choice”. (1) Palliative sedation is an
important technique for combating extreme suffering in the rare cases where, despite
the appropriate use of conventional therapies, we cannot relieve distressing symptoms.
The case of LW demonstrates a perfect example of when palliative sedation is necessary.

 

Robert Enck first used the term “terminal
sedation” to describe the practice of drug-induced sedation for refractory
symptoms in the palliative care literature in 1991. (2) The name was later changed to
“palliative sedation”. Unfortunately, there remains much debate over the use of
palliative sedation to unconsciousness due to its potential to be misconstrued
as active euthanasia. Some critics describe palliative sedation as ”slow
euthanasia”. (3) Euthanasia refers to the
intentional ending of a person’s life through “the administration of a lethal
agent by another person to a patient for the purpose of relieving the patient’s
intolerable and incurable suffering”. (4) Palliative sedation is not
euthanasia. Palliative sedation is defined as the intentional sedation until
natural death, of a patient suffering uncontrollable refractory symptoms in the
last days of life to the point of almost, or complete unconsciousness – but not
intentionally causing death. (5) Various different governing
bodies, including the National Hospice and Palliative Care Organisation, have
set out strict guidelines, standards and recommendations for the appropriate
implementation of palliative sedation. These guidelines clearly emphasise the
ethical differences between the euthanasia and palliative sedation. (6)

The prevalence of palliative
sedation use in terminally ill patients is reported to be between 1% and 52%. (7–9) Whilst, prevalence rates
appropriately vary in correlation with the complexity of illness and severity
of suffering in differing patient populations, a high percentage of patients
receiving palliative sedation should be a cause for concern.  The NHPCO feels higher prevalence rates could
indicate that the full spectrum of interdisciplinary interventions for
suffering are not being effectively explored and trialled. (6) It is important to remember
that whilst palliative sedation is a legal and useful option it should only be
used as a last resort. In the case of LW all other options had been carefully
explored and trialled prior to the implementation of palliative sedation.

 

Following this case I reviewed the
literature regarding palliative sedation and found that many of the guidelines were
similar in content, stating palliative sedation should only be considered when:

(a)    the
patient is terminally ill, and death expected within hours or days,

(b)   the
patient is suffering intolerable and refractory symptoms and conventional
methods for managing their symptoms have failed

(c)    consent
is obtained from the patient or his/her proxy,

(d)   the
withdrawal of food and water is discussed,

(e)    families
are informed that the patient will generally not regain consciousness and will
die,

(f)    sedation
is achieved by lowering the patient’s consciousness using non-opioid sedative
drugs to the point of almost, or complete unconsciousness to control the
refractory symptoms

(g)   causing
death is not the intention even though it may not be possible to achieve
adequate symptom control except at the risk of shortening the patient’s life (6,10)

 

In the following paragraphs I will
attempt to address the above guidelines and apply them to the case of LW to
assess if they were appropriately followed when deciding her suitability for
palliative sedation and implementing the procedure itself.

 

The first criterion of palliative
sedation, that the patient is terminally ill, is an obvious one. However, it is
also important that the physician is satisfied that they are imminently dying
before considering palliative sedation, with most guidelines suggesting a
prognosis of less than fourteen days. (11) LW had a known terminal
diagnosis and her family, medical and nursing staff prior to the decision to
implement palliative sedation, noted changes in her condition suggestive of
terminal restlessness and entering the terminal phase of her illness.

 

Fortunately only a minority of
dying patients experience intolerable sand refractory symptoms. Of those
symptoms requiring palliative sedation, pain is the most commonly reported,
with the World Health Organization (WHO) suggesting that between 10% to 20% of
terminal cancer patients experience such severe pain (12). In addition to pain, other
symptoms including dyspnoea, nausea and vomiting, muscular spasms, restlessness
and emotional distress may be more difficult to control at the end of life. (13) In the case of LW she had
intolerable and distressing pain that was refractory to all our best opioid analgesia,
methadone, ketamine, neuropathic analgesia and intra-thecal medication. Despite
everyone’s best efforts this lady was screaming in pain when she was alert
enough to do so. Appropriately, both the palliative and pain specialists had
exhausted all available options before the idea of palliative sedation was
introduced. She was also the first patient that year requiring palliative
sedation in the unit, a fact that shows it is not a commonly required
intervention at the centre.

 

Prior to implementing palliative
sedation it is essential the patient and relevant family members are educated
and given enough information and time to weigh up the pros and cons of
consenting to the procedure. It is also extremely important that the patient
and their next of kin are aware that the patient will not be provided with
artificial hydration or feeding and the reasons for this. Many experts agree
that continuing artificial hydration or feeding is an unnecessary burden with
no clear symptom benefit. (14) In addition, there is no
clear evidence that providing it prolongs life in imminently dying patients. (15) It is very important that the
patient and their next of kin are clear and consent to the fact that the
patient will not regain consciousness and will die within days of its
commencement. The above issues were all clearly discussed with LW’s husband,
who was also her enduring power of attorney. A limited conversation was had
with LW as she was delirious and lacked the capacity to understand or consent
to the procedure.

 

It is recommended clinicians use
the minimal dose of sedatives necessary to achieve an acceptable relief of
suffering. Benzodiazepines remain the most favoured class of sedatives in
palliative care. Midazolam is the most commonly used drug and is administered
by subcutaneous infusion via a syringe driver. The psychotropic drugs
haloperidol and levomepromazine may be more appropriate for the specific
management of delirium and can be used in combination with benzodiazepines. LW
was deeply sedated with the combination of midazolam and levomepromazine due to
her extreme distress when alert, after a discussion with the family about what
they felt was in her best interests.

 

LW died the day following the
commencement of palliative sedation. Vitally, her husband was informed prior to
the initiation of the sedation, that there was a possibility she could die
quickly post its commencement. It is very important that this conversation is
had to ensure the patient and their family are clear on the primary intention
of palliative sedation and to draw clear distinctions between it and
euthanasia. Ethical concerns regarding the role of palliative sedation in
hastening death appear unfounded and several recent trials have shown that increases
in the sedative dose in the last hours of life were not associated with
shortened overall survival, suggesting that the doctrine of double effect
rarely has to be invoked to excuse sedative prescribing in end-stage care. (7) The doctrine of double effect
is credited to the 13th-century Catholic priest Thomas Aquinas, who claimed
that it was permissible to kill someone in your own self-defence, but only if
you did not mean to kill that person. (16) This has been the basic idea
ever since. It is grounded in the ethical principle of proportionality and
asserts that, an action (sedation) in the pursuit of a good outcome (relief of
pain) is ethically acceptable, even if achieved through means with an
unintended but foreseeable negative outcome (loss of social interaction and
possibility of hastening death), as long as the negative outcome is outweighed
by the good outcome.

 

There has been lots of research
into the impact of palliative sedation on both family members and medical staff
looking after the dying patient. A recent systematic review by Ziegler et al. (17) looking at the impact of
continuous palliative sedation on healthcare professionals’ emotional
well-being concluded that it is generally not associated with lower emotional
health. They concluded that a higher emotional burden is more likely when
professionals struggled with either clinical or ethical justifications for the
sedation. This reflects the importance of improved education regarding the
practice and ensuring that it is implemented only in carefully selected
patients who meet all the recommended criteria.

 

Studies investigating how the use
of palliative sedation affects family members, have found that the majority of
relatives view the provision of palliative sedation family member positively
because it contributes to a peaceful dying process and relieves the distress
and suffering they had been suffering prior to its implementation. However,
relatives, commonly indicate discontent with how information is provided and
with the communication in general. Also, despite the majority of relatives
wanting palliative sedation (as it relieves their loved ones distress and
suffering), there are indications that they experience substantial distress
with its use. This psychological distress is something which should be
anticipated and close psychological support and follow-up needs to be offered
to family members. In LW’s case her husband and family were followed up very
closely by our social worker throughout the entire process and were offered
bereavement follow-up on her death.

 

 

 

 

 

 

 

Personal Reflection:

 

This case highlighted an issue,
which in my previous limited palliative experience I had never encountered –
intractable pain and suffering. Naively I presumed all pain could be managed
with a combination of the wide range of analgesia techniques we have available.
In this case all the available analgesia options were utilised and we were
still left with a woman who was screaming in pain and suffering emotionally as
a result. Consequently, through watching her distress and suffering, her
husband and family, in addition to all the staff looking after her, also
suffered psychologically. I found listening to a grown woman scream in agony
very confronting. I also found it very difficult to watch her husband plead
with medical staff to do anything at all to take away his wife’s pain. That is
why palliative sedation, a technique I had no prior knowledge off, was
utilised.

After reading through the relevant
guidelines, I learned why it was a suitable option for this particular patient.
I learned a lot about the strict criteria that should be met prior to its implementation.
I also learned of the importance of communicating the process clearly to family
and friends and all the staff looking after the patient, as it helps ensure
everyone is clear on the goals of care. This education and communication is essential
to allay fears that palliative sedation is in anyway related to euthanasia. I
learned a lot about the ethical dilemmas in delivering palliative sedation such
as the doctrine of double effect and the concerns regarding the patient being
deprived off food and water.

 

This case also highlights the
importance of advance care planning. Fortunately, LW and her husband had
completed enduring power of attorney (EPOA) paperwork whilst she still had
capacity. I was also grateful that doctors had the foresight to have acute resuscitation
planning conversations with LW early in her illness whilst she still had
capacity, as it aided clinical decisions during the later stages of her
illness. This case highlighted the importance of encouraging patients’ to
discuss their choices and wishes for their end of life care in a frank and open
fashion with their EPOA, family, and doctors. I believe LW’s advanced planning
and discussions with her family made it easier for them to consent to palliative
sedation.

 

Overall, this case reinforced the
primary roles of palliative care – “patient- and family-centred care that
optimizes quality of life by anticipating, preventing, and treating suffering”.
(1) This case was to the
forefront of my mind throughout the rest of my palliative term and increased my
knowledge of the ethical and legal differences between palliative sedation and
euthanasia.

 

 

Conclusion:

 

In conclusion, palliative sedation
is a very useful technique, which can be utilised, in the specialist palliative
care setting when all other techniques to manage intolerable and refractory
symptoms have failed. It is important that clear guidelines are followed to
ensure it is only offered to suitable patients and implemented in the correct
manner. It is vital to ensure the patient and their family are fully involved
in the process and consent to its implementation. It is equally important to
ensure the family are provided with adequate psychological support and
follow-up, pre-, during and post this procedure. Ethically it is in keeping
with the principles of palliative care and better education is required for
both medical staff and the public to draw clear distinctions between it and
active euthanasia.