Introduction The aim of palliative care is to achievethe best possible quality of life for the person with a life-limiting illnessand to provide support for their family and carers. A key role in this isproviding adequate relief of pain and any other distressing symptoms. Veryrarely a situation arises where despite the best possible analgesia, adequaterelief of pain is not achieved.
In this context the potential for usingpalliative sedation may be considered. The decision to prescribe palliativesedation is one which should only be reached after all other options have beenexhausted and it has been clearly established that the distressing symptom isintractable. This case study reviews the management of a patient who requiredpalliative sedation and the various steps and processes that should beimplemented prior to this intervention being used. It also aims to address theimportant differences between palliative sedation and euthanasia as there aremany misinterpretations of what palliative sedation actually is in theliterature and amongst medical staff and patients.
It also aims to ascertainthrough a review of the available evidence whether palliative sedation hastensdeath.Case presentation LW, a 63 year old woman withmetastatic rectal cancer first diagnosed in 2010 was admitted electively to thepalliative care unit for an intrathecal pump change on September 5th2017 when I met her for the first time. LW was initially diagnosed withrectal cancer in 2010. At this time she had no past medical history, wasallergic to codeine and was not on any regular medications at diagnosis.
Shewas a non-smoker and seldom drank alcohol. She lived at home with her husbandand was fully independent in her ADLs. She was working as a nurse prior to herdiagnosis. She initially had a primarysurgical anterior resection and subsequently commenced chemotherapy (Folinicacid, Fluorouracil and Oxaliplatin).
In 2011 she had surgical resection ofliver metastases. Following these treatments she had a long period of apparentremission however, PET scans in 2013 revealed avid nodules in the right upperlung lobe and in the pelvis which were suspicious for metastases. She declinedfurther surgical intervention for these lesions instead opting for radiotherapyto the pelvis. She was first referred to thepalliative care team in 2015 due to pain in her sacrum and vulva. She was commencedon Panadol osteo, 5mg Norspan Patch and PRN morphine liquid.
She was alsoreviewed by the Medical Oncology team after repeat CT scans showed progressionof metastatic disease in the pelvic area. They recommended commencement ofpalliative Erbitux which she completed with no issues. Despite the palliative chemotherapythe pain in her pelvic area continued to increase and she was offered further palliativeradiotherapy which she initially declined.
The palliative team switched herfrom a buprenorphine patch to a fentanyl patch and commenced her on methadoneand pregabalin. Despite the changes to her medications her pain continued toincrease so in mid-2016 she agreed to undergo the palliative radiotherapy. Thisgave good pain relief but, unfortunately, it only lasted a couple of months. Despiteamitriptyline 20mg nocte and pregabalin 25mg BD, she had increasing neuropathicpain and required review in the palliative OPD. At this appointment her pregabalinwas increased to 50mg BD. On review six weeks later in clinic, she reportedincreasing neuropathic pain. Her pregablin was therefore increased to 100mg BDwith advice to her GP to increase this to a max dose of 300mg BD if there wasan incremental improvement in her pain.
Unfortunately at her next OPDreview her pain was so severe she required admission to hospital. During thisadmission she was seen by the acute pain team and an epidural catheter wasinserted for pain management. Through this she was receiving fentanyl andropivicaine, in addition to her oral methadone 5mg mane, pregabalin 150mg BD,amitriptyline 25mg nocte, dexamethasone 2mg mane and a syringe driver with Buscopan30mg, haloperidol 2.5mg and midazolam 2.5mg. Due to the success of her epiduralpain relief an intrathecal pump was inserted and commenced mid-December 2016.
She had a prolonged hospital admission to optimise her analgesia and wasdischarged home at the end of March 2017 on an intrathecal infusion of 77mcgmorphine per day, regular oral methadone 10mg BD, pregabalin 150mg BD and amitriptyline35mg nocte, with as required hydromorphone 2 – 8 mg/day and buccal fentanyl200mcg up to twice per day. Following discharge she was lookedafter at home by her husband and had a very attentive General Practitioner whoclosely liaised with the palliative care outreach team and pain specialists.Despite ongoing complex pain management issues LW and her husband remainedoptimistic and drew a lot of strength from their strong religious beliefs. Theyboth valued the time spent at home and despite her decline in function and the factthat she was now bed-bound, continued to find joy in life.
During this timethey also sorted out her legal will and she appointed her husband as herenduring power of attorney and completed an acute resuscitation plan with herdoctor, She was electively admitted againin September 2017 for an intra-thecal pump change. This admission whilstprimarily to change the pump was also organised to provide respite for herhusband who was finding it increasingly difficult to look after his wife athome. On admission it was clear that her pain was inadequately controlled andshe was commenced on a ketamine infusion. When reviewed by the pain specialistthe following day she was in severe distress and crying with pain. She wastherefore given a bolus through her intra-thecal pump of 6mg ropivacaine and224mcg morphine.
Her pump was refilled the following day with ropivacaine12mg/day, morphine 886mcg/day and clonidine 53mcg/d. The ketamine infusion wasceased after three days as it was felt to have made no difference to her pain. Unfortunatelydespite the changes to her analgesia her pain remained poorly managed with hercrying and screaming in pain whenever she was alert enough to do so. The nursing and medical staff duringthis time noticed differences in her level of alertness and ability to swallowsuggestive of entering the terminal phase of her disease. She was also noted tobe delirious and confused. The Consultant looking after LW requested anindependent review by a colleague palliative care physician.
Following this acase conference was held and it was agreed that LW fulfilled the criteria (imminentlydying/within the last 1-2 weeks of life, refractory symptoms causingintractable suffering) for palliative sedation. Her husband was given lots ofsupportive counselling from all the staff including the social worker on theteam. A family meeting was held where her husband and the rest of the familywere updated and educated on what to expect once terminal sedation wascommenced. LW and her family consented to palliative sedation and it wascommenced on the 12th of September 2017.
The drugs used tofacilitate this were given via syringe driver and included levomepromazine 25mgand midazolam 40mg. She was also charted midazolam 5-10mg subcutaneously asrequired for agitation. She died the day after palliative sedation wascommenced, comfortably, surrounded by her entire family. Discussion: The definition of ”palliativecare” 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 ofillness involves addressing physical, intellectual, emotional, social, andspiritual needs and facilitating patient autonomy, access to information, andchoice”.
(1) Palliative sedation is animportant technique for combating extreme suffering in the rare cases where, despitethe 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 “terminalsedation” to describe the practice of drug-induced sedation for refractorysymptoms in the palliative care literature in 1991. (2) The name was later changed to”palliative sedation”. Unfortunately, there remains much debate over the use ofpalliative sedation to unconsciousness due to its potential to be misconstruedas active euthanasia.
Some critics describe palliative sedation as ”sloweuthanasia”. (3) Euthanasia refers to theintentional ending of a person’s life through “the administration of a lethalagent by another person to a patient for the purpose of relieving the patient’sintolerable and incurable suffering”. (4) Palliative sedation is noteuthanasia. Palliative sedation is defined as the intentional sedation untilnatural death, of a patient suffering uncontrollable refractory symptoms in thelast days of life to the point of almost, or complete unconsciousness – but notintentionally causing death. (5) Various different governingbodies, including the National Hospice and Palliative Care Organisation, haveset out strict guidelines, standards and recommendations for the appropriateimplementation of palliative sedation.
These guidelines clearly emphasise theethical differences between the euthanasia and palliative sedation. (6) The prevalence of palliativesedation use in terminally ill patients is reported to be between 1% and 52%. (7–9) Whilst, prevalence ratesappropriately vary in correlation with the complexity of illness and severityof suffering in differing patient populations, a high percentage of patientsreceiving palliative sedation should be a cause for concern. The NHPCO feels higher prevalence rates couldindicate that the full spectrum of interdisciplinary interventions forsuffering are not being effectively explored and trialled. (6) It is important to rememberthat whilst palliative sedation is a legal and useful option it should only beused as a last resort. In the case of LW all other options had been carefullyexplored and trialled prior to the implementation of palliative sedation.
Following this case I reviewed theliterature regarding palliative sedation and found that many of the guidelines weresimilar in content, stating palliative sedation should only be considered when:(a) thepatient is terminally ill, and death expected within hours or days,(b) thepatient is suffering intolerable and refractory symptoms and conventionalmethods for managing their symptoms have failed (c) consentis obtained from the patient or his/her proxy, (d) thewithdrawal of food and water is discussed, (e) familiesare informed that the patient will generally not regain consciousness and willdie, (f) sedationis achieved by lowering the patient’s consciousness using non-opioid sedativedrugs to the point of almost, or complete unconsciousness to control therefractory symptoms(g) causingdeath is not the intention even though it may not be possible to achieveadequate symptom control except at the risk of shortening the patient’s life (6,10) In the following paragraphs I willattempt to address the above guidelines and apply them to the case of LW toassess if they were appropriately followed when deciding her suitability forpalliative sedation and implementing the procedure itself. The first criterion of palliativesedation, that the patient is terminally ill, is an obvious one. However, it isalso important that the physician is satisfied that they are imminently dyingbefore considering palliative sedation, with most guidelines suggesting aprognosis of less than fourteen days. (11) LW had a known terminaldiagnosis and her family, medical and nursing staff prior to the decision toimplement palliative sedation, noted changes in her condition suggestive ofterminal restlessness and entering the terminal phase of her illness. Fortunately only a minority ofdying patients experience intolerable sand refractory symptoms. Of thosesymptoms requiring palliative sedation, pain is the most commonly reported,with the World Health Organization (WHO) suggesting that between 10% to 20% ofterminal cancer patients experience such severe pain (12). In addition to pain, othersymptoms including dyspnoea, nausea and vomiting, muscular spasms, restlessnessand emotional distress may be more difficult to control at the end of life. (13) In the case of LW she hadintolerable and distressing pain that was refractory to all our best opioid analgesia,methadone, ketamine, neuropathic analgesia and intra-thecal medication.
Despiteeveryone’s best efforts this lady was screaming in pain when she was alertenough to do so. Appropriately, both the palliative and pain specialists hadexhausted all available options before the idea of palliative sedation wasintroduced. She was also the first patient that year requiring palliativesedation in the unit, a fact that shows it is not a commonly requiredintervention at the centre.
Prior to implementing palliativesedation it is essential the patient and relevant family members are educatedand given enough information and time to weigh up the pros and cons ofconsenting to the procedure. It is also extremely important that the patientand their next of kin are aware that the patient will not be provided withartificial hydration or feeding and the reasons for this. Many experts agreethat continuing artificial hydration or feeding is an unnecessary burden withno clear symptom benefit. (14) In addition, there is noclear evidence that providing it prolongs life in imminently dying patients.
(15) It is very important that thepatient and their next of kin are clear and consent to the fact that thepatient will not regain consciousness and will die within days of itscommencement. The above issues were all clearly discussed with LW’s husband,who was also her enduring power of attorney. A limited conversation was hadwith LW as she was delirious and lacked the capacity to understand or consentto the procedure. It is recommended clinicians usethe minimal dose of sedatives necessary to achieve an acceptable relief ofsuffering. Benzodiazepines remain the most favoured class of sedatives inpalliative care. Midazolam is the most commonly used drug and is administeredby subcutaneous infusion via a syringe driver.
The psychotropic drugshaloperidol and levomepromazine may be more appropriate for the specificmanagement of delirium and can be used in combination with benzodiazepines. LWwas deeply sedated with the combination of midazolam and levomepromazine due toher extreme distress when alert, after a discussion with the family about whatthey felt was in her best interests. LW died the day following thecommencement of palliative sedation. Vitally, her husband was informed prior tothe initiation of the sedation, that there was a possibility she could diequickly post its commencement. It is very important that this conversation ishad to ensure the patient and their family are clear on the primary intentionof palliative sedation and to draw clear distinctions between it andeuthanasia. Ethical concerns regarding the role of palliative sedation inhastening death appear unfounded and several recent trials have shown that increasesin the sedative dose in the last hours of life were not associated withshortened overall survival, suggesting that the doctrine of double effectrarely has to be invoked to excuse sedative prescribing in end-stage care. (7) The doctrine of double effectis credited to the 13th-century Catholic priest Thomas Aquinas, who claimedthat it was permissible to kill someone in your own self-defence, but only ifyou did not mean to kill that person. (16) This has been the basic ideaever since.
It is grounded in the ethical principle of proportionality andasserts that, an action (sedation) in the pursuit of a good outcome (relief ofpain) is ethically acceptable, even if achieved through means with anunintended but foreseeable negative outcome (loss of social interaction andpossibility of hastening death), as long as the negative outcome is outweighedby the good outcome. There has been lots of researchinto the impact of palliative sedation on both family members and medical stafflooking after the dying patient. A recent systematic review by Ziegler et al.
(17) looking at the impact ofcontinuous palliative sedation on healthcare professionals’ emotionalwell-being concluded that it is generally not associated with lower emotionalhealth. They concluded that a higher emotional burden is more likely whenprofessionals struggled with either clinical or ethical justifications for thesedation. This reflects the importance of improved education regarding thepractice and ensuring that it is implemented only in carefully selectedpatients who meet all the recommended criteria.
Studies investigating how the useof palliative sedation affects family members, have found that the majority ofrelatives view the provision of palliative sedation family member positivelybecause it contributes to a peaceful dying process and relieves the distressand suffering they had been suffering prior to its implementation. However,relatives, commonly indicate discontent with how information is provided andwith the communication in general. Also, despite the majority of relativeswanting palliative sedation (as it relieves their loved ones distress andsuffering), there are indications that they experience substantial distresswith its use. This psychological distress is something which should beanticipated and close psychological support and follow-up needs to be offeredto family members. In LW’s case her husband and family were followed up veryclosely by our social worker throughout the entire process and were offeredbereavement 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 managedwith a combination of the wide range of analgesia techniques we have available.In this case all the available analgesia options were utilised and we werestill left with a woman who was screaming in pain and suffering emotionally asa result.
Consequently, through watching her distress and suffering, herhusband and family, in addition to all the staff looking after her, alsosuffered psychologically. I found listening to a grown woman scream in agonyvery confronting. I also found it very difficult to watch her husband pleadwith medical staff to do anything at all to take away his wife’s pain. That iswhy palliative sedation, a technique I had no prior knowledge off, wasutilised. After reading through the relevantguidelines, 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 familyand friends and all the staff looking after the patient, as it helps ensureeveryone is clear on the goals of care. This education and communication is essentialto allay fears that palliative sedation is in anyway related to euthanasia. Ilearned a lot about the ethical dilemmas in delivering palliative sedation suchas the doctrine of double effect and the concerns regarding the patient beingdeprived off food and water. This case also highlights theimportance of advance care planning. Fortunately, LW and her husband hadcompleted enduring power of attorney (EPOA) paperwork whilst she still hadcapacity.
I was also grateful that doctors had the foresight to have acute resuscitationplanning conversations with LW early in her illness whilst she still hadcapacity, as it aided clinical decisions during the later stages of herillness. This case highlighted the importance of encouraging patients’ todiscuss their choices and wishes for their end of life care in a frank and openfashion with their EPOA, family, and doctors. I believe LW’s advanced planningand discussions with her family made it easier for them to consent to palliativesedation. Overall, this case reinforced theprimary roles of palliative care – “patient- and family-centred care thatoptimizes quality of life by anticipating, preventing, and treating suffering”.(1) This case was to theforefront of my mind throughout the rest of my palliative term and increased myknowledge of the ethical and legal differences between palliative sedation andeuthanasia. Conclusion: In conclusion, palliative sedationis a very useful technique, which can be utilised, in the specialist palliativecare setting when all other techniques to manage intolerable and refractorysymptoms have failed.
It is important that clear guidelines are followed toensure it is only offered to suitable patients and implemented in the correctmanner. It is vital to ensure the patient and their family are fully involvedin the process and consent to its implementation. It is equally important toensure the family are provided with adequate psychological support andfollow-up, pre-, during and post this procedure. Ethically it is in keepingwith the principles of palliative care and better education is required forboth medical staff and the public to draw clear distinctions between it andactive euthanasia.