Thoughtful end of life prescribing
6 MINUTE READ
From Luke’s Journal 2021 | Dying & Palliative Care | Vol.26 No.2
Death and pain are two of the most complex of human experiences and can be examined from theological, philosophical, sociological, ethical and medical perspectives. Revelation speaks of a time when there will be no more death or pain which we look forward to with faith, hope and confidence.
“And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and He will dwell with them. They will be His people, and God Himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”
In the meantime, we as doctors have the awesome responsibility of caring for people as they die, mourn, cry and suffer pain.
This article focuses on pain in the last days of life from a medical perspective.
One of the challenges of palliative care is identifying when a person is in the last days of life. The Australian Commission on Safety and Quality in Health Care1 identifies the following triggers:
- Ongoing deterioration despite optimal clinical care
- Increasing difficulty swallowing or taking oral medications
- Increasing disinterest in food or fluid
- Profound weakness, decrease in function and being bed bound
- Drowsiness or sleeping for extended periods of time.1
If someone is in their last days of life, their goals of care need to be clear to everyone involved.
What is pain?
The International Association for the Study of Pain defines pain as “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”.2 Cicely Saunders coined the term Total Pain in 1978 to describe the suffering associated with physical, psychological, social and spiritual distress.2 Death and dying, due to the grief of loss and separation from those we love, the physical illness and fear, is almost always associated with pain under Saunders’ definition, not only for the person dying but also for their family and friends.
We understand more how the psychological, spiritual and social aspects interact with the experience of pain, modulating pain to either increase or decrease the pain.2
What is the prevalence of pain at the end of life?
Pain is common at the end of life. Whatever the cause of severe illness, more than half of people (52.4%) will experience pain in the last two weeks of life.3 In an Australian sample of 18,975 patients receiving palliative care and entering the terminal phase 52.7% of patients were pain free, 6% had severe pain (7-10/10 on a Numeric Rating Scale [NRS]) and the remainder had mild to moderate pain.3 It is therefore important to identify who in your care may be at risk of dying (see blue box above) and screen them regularly to see if they have pain. For people who are cognitively intact and able to verbalise their pain, this can be done using a NRS or a categorical scale (none, mild, moderate or severe.) For those with cognitive impairment, this can be done with a tool developed specifically for that population such as the Abbey Pain Scale.
What is important to people nearing the end of life?
Asking people what is important to them as they near the end of life will help shed light on ways we can best help. In an American cohort, nine items were determined from previous focus groups and ranked in order of importance. The two most important were to be pain free and to be at peace with God. Other factors ranked as important by more than 70% of respondents were to be free of other symptoms, being prepared for death, having a sense of completion and being treated as a whole person.3
Screening for pain and assessing pain at the end of life
People nearing the end of life will need regular assessment to detect uncontrolled pain. For people with pain, a comprehensive assessment will help reveal the cause and the mechanism of pain, whether nociceptive or neuropathic and any modulators of the pain. This includes a history of the pain experience including: Precipitating and relieving factors, Quality of pain and quality of life (impact of the pain), Radiation, Site and Timing (PQRST) of the pain.
“Asking people what is important to them as they near the end of life will help shed light on ways we can best help.”
It is also important to understand what the pain means to the person. For example, in someone with cancer that has spread to the bones, do they fear that the pain signals they are becoming quadriplegic, or that it may be a precursor to an impending fracture or that may be transferred to a hospital for acute care? The pain may be exacerbated by fear and other causes of distress such as anxiety, depression or associated symptoms (such as constipation) which may occur with pain. People may be afraid of worsening and persisting pain, disability and, importantly, afraid of dying and death.
Managing pain at the end of life
Managing pain at the end of life is ideally done by a multidisciplinary team. As we have seen, spiritual, psychological and social distress can all exacerbate pain. This distress does not respond well to pharmacological treatment. Pastoral care, good communication, ensuring people are dying in their preferred place, making sure the person dying has the opportunity to connect with all the people who they love, all help to relieve suffering.
Surprisingly, there have been very few studies of opioids at the end of life. Morphine and fentanyl have been found to be effective although more studies are needed.3
Safe anticipatory prescribing in case pain develops
A significant proportion of patients will develop pain in the last days of life. Since one of the highest priorities for people at the end of life is being pain free, guidelines recommend anticipatory prescribing to ensure analgesia is available if needed.
“A significant proportion of patients will develop pain in the last days of life.”
Prior to prescribing anticipatory medications, discuss the plan with the patient and family/person responsible. Review the current medications and check for potential interactions, allergies and contraindications. Consider stopping medications which are no longer contributing to the person’s quality of life. Once prescribed, hand over to medical and nursing staff involved in caring for the patient. The patient should be monitored closely for symptoms.
If pain is identified, non-pharmacological approaches should be tried first such as repositioning and excluding urinary retention. For opioid naïve people, morphine 2.5mg subcutaneously one hourly as required is an appropriate starting dose, with a maximum of 6 doses or 15mg in 24 hours. It is better not to put a dose range, but be specific about the amount and frequency. For people with an eGFR<30, consider referral to a specialist palliative care service.
For those already on opioids, the regular dose will need to be converted to a parenteral dose. Guidance for dose conversions is available on the Australian and New Zealand College of Anaesthetists Opioid Calculator app. The required PRN dose will be one sixth of the total 24 hour opioid dose given subcutaneously one hourly PRN.
Response to analgesia must be closely monitored to ensure appropriate dosing to relieve pain without adverse effects. It is important to note that HYDROmorphone is FIVE times more potent than morphine. If you are considering its use, please consult your local specialist palliative care service.3
It hurts the doctor too
We have thought about the pain and grief suffered by the dying and their family and friends. We all know the grief and pain we, as doctors, experience when people we have cared for, sometimes for decades, die. We have a responsibility to care for ourselves and to seek support if we are distressed. Christ is our strength, our source of love, light, life, joy, peace and comfort. His grace is sufficient. He provides for all our needs and that provision includes those who can comfort us and provide wise counsel.
Dr Melanie Lovell Dr Melanie Lovell is a palliative care physician with HammondCare in Sydney. She is Clinical Associate Professor at the University of Sydney and Adjunct Professor at the University of Technology, Sydney. She is Chair of the Pain Node for the Palliative Care Clinical Studies Collaborative and Cancer Symptom Trials group and founding Chair of the Australian Cancer Pain Management Guidelines Working Party.
- Australian Commission on Safety and Quality in Healthcare. 2021. Available from https://www.safetyandquality.gov.au/sites/default/files/2020-11/end-of-life_care_-_last_days_of_life_0.pdf.)
- Raja SN, Carr DB, Cohen M, Finnerup NB, Flor H, Gibson S, Keefe FJ, Mogil JS, Ringkamp M, Sluka KA, Song, X-J, Stevens, Bonnie Sullivan, Mark D. Tutelman, Perri R. Ushida, Takahiro Vader, Kyle The revised International Association for the Study of Pain definition of pain: concepts, challenges, and compromises, PAIN. 2020;161(9):1976-1982. Available from https://doi: 10.1097/j.pain.0000000000001939
- Saunders CM, The management of terminal malignant disease. 1st Ed. London: Edward Arnold, 1978.
- Siddall.PJ, Lovell M, MacLeod R. Spirituality: What is its role in pain medicine? Pain Medicine, 2015.16(1)51–60. Available from, https://doi.org/10.1111/pme.12511
- Kehl KA, Kowalkowski JA. A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life. Am. J. Hospice Pall. Med. 2013;30(6):
601-616. Available from
- Clark K. Care at the very end-of-life: Dying cancer patients and their chosen family’s needs. Cancers (Basel) 2017.9(2):11. Available from https//doi:10.3390/cancers9020011
- Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered Important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–2482. Available from https:// doi:10.1001/jama.284.19.2476
- Jansen K, Haugen DF, Pont L, Ruths S. Safety and effectiveness of palliative drug treatment in the last days of life.
-A systematic literature review. J Pain Symptom Manage. 2018 Feb;55(2):508-521.e3. Availabke from https:// doi: 10.1016/j.jpainsymman.2017.06.010. Epub 2017 Aug 10. PMID: 28803078.
- Clinical Excellence Commission Last Days of Life Toolkit 2017 Sydney Clinical Excellence Commission.