If pain isn’t controlled well, it can interfere with every aspect of that person’s day, from their ability to carry out daily activities, such as washing and dressing, to their tolerance of other treatments. When pain is present, many other goals, such as managing symptoms—including nausea, coping with interventions such as radiotherapy, or simply spending quality time with family or friends—may be unachievable. All of these interruptions take away from the quality of a person’s life and can aggravate anxiety.
Patients may have more than one type of pain, or pain at more than one location, and each needs to be clearly identified and assessed before pain relievers are started or changed. It’s important to know whether pain is nocipcetive (coming from damaged tissues) or neuropathic (from damaged nerves) because different treatments are used for these different types of pain. Pain that is constant and predictable may be more suited for treatments such as pain-relieving patches (which deliver a constant level of opioid) than fluctuating and unforeseeable pain which may be better managed with as-required dosing. Managing the pain of an acute headache may be very different to that of bony metastases or concurrent chronic problems such as osteoarthritis.
Anxiety also needs to be clearly defined and assessed at regular intervals as it can reduce a patient’s tolerance for other problems, particularly pain, and substantially impact their overall functioning. But anxiety hasn’t been well-studied or measured in patients who are at the end of life.
Many factors may contribute to anxiety in a patient receiving palliative care, from fears about death or physical symptoms to practical issues around housing, concern about dependents, and changing relationships. Anxiety may develop towards the end of life in response to these prognosis-related stressors— i.e. it may be a form of adjustment disorder. With help, psychological adjustment reactions to a terminal diagnosis, which may include anxiety, usually resolve within a few weeks, but about 10-20 percent of patients develop formal psychiatric disorders that require more specific help.1 It’s vital that this opportunity to improve quality of life is not missed.
Anxiety can Complicate Pain Treatment
Aggressive interventions common in cancer therapy, such as major surgery, chemotherapy, or radiotherapy are often a trigger for intense anxiety. These issues are all compounded in the context of a terminal illness, exacerbated by the reality of impending death.
A number of symptoms and signs related to anxiety should be checked. These include psychological symptoms such as:
- Difficulty concentrating
- Inability to relax
- Sleep disruption
- Signs of motor tension such as muscle aches and fatigue, tremors, restlessness, or headaches
- Worsening of other pains
- Symptoms reflecting an activation of the autonomic nervous system such as palpitations, sweating, dry mouth, or diarrhea
It’s important to consider the overlap between both anxiety and depression, and sometimes with delirium where agitation, irritability, and motor restlessness can be symptoms. Patients with delirium risk being mislabeled as “anxious,” although differentiation is not usually difficult because of the significant cognitive impairment with disorientation and memory impairment that occurs in delirium.7
The Relationship Between Pain and Anxiety in Palliative Care
Anxiety is also a significant symptom in at least 25 percent of cancer patients and 50 percent of those with advanced congestive heart failure or chronic obstructive pulmonary disease.6 Pain and anxiety are often entwined. Fear or worries are common as death approaches and can greatly reduce a person’s pain threshold, making pain more difficult to control, while the experience of pain then further heightens anxiety. Pain and anxiety often need to be considered together, as well as within the context of the holistic review that is central to palliative care.
Pain and anxiety often occur together in the last weeks of life and must be examined with heed to each other. Uncontrolled pain can easily lead to anxiety, causing tension, restlessness, agitation and sweating and it may be wise to consider anxiety as the primary diagnosis only if it persists after pain is adequately controlled (Payne). However, anxiety can, by itself, lower pain thresholds, amplifying the perception of pain and making pain management more difficult, with a greater need for aggressive pharmacological interventions.4 There may even be a spiral of anxiety fueling distress among family and friends that can further add to the patient’s pain.2
Both anxiety and pain can interfere with the patient’s ability to function at the end of life, maintain what little pleasure is left, or deal with important decisions that arise near the end of life. These may all be perceived as “normal” challenges that come with age, which risks passive acceptance of symptoms rather than active management. Both patients and clinicians often agree to avoid discussing psychological problems like anxiety, because they might put the patient in more distress and distract the physician from the “more important” medical problems.5 But psychological distress is no less like an open sore, a painful metastatic deposit, or any other kind of physical ailment. Psychological wellness needs to be properly evaluated in order to offer appropriate management, even if disturbing the “sore” risks initial discomfort. For palliative care, assessment of psychological well-being should be a part of the protocol, and specialists are recognizing this, as mood, fears, and worries are becoming increasingly present in end-of-life care documents.
Setting Goals and Assessing Outcome Measures
Once the picture of pain and anxiety is clearer, it’s helpful to review the situation with the patient and their family in order to confirm contributory factors and set realistic goals for their management. Specific treatments, including non-drug therapies, can then be selected and planned to match the nature and timing of symptoms.
While individual symptoms can be assessed in these ways, the essence of palliative care is a holistic approach which encompasses psychosocial and spiritual dimensions in addition to physical suffering. Within this approach, outcome measures (i.e. overall assessments of the effects of any treatment or intervention) are essential in order to be clear about the real meaning to the patient of efforts to control pain and anxiety, and how these are determining their overall well-being.
Outcome measures should be applied regularly after a treatment plan has been initiated to determine the efficacy of the plan and guide further development. For example, The Palliative Care Outcome Scale 15 includes 10 items on physical symptoms, emotional, psychological and spiritual needs, provision of information, and support.
Considering patient-led measures of outcome is also useful. They help balance the compromise that is often needed between achieving symptom control and managing side effects. Ultimately, feedback from the patient on how they are feeling carries much more weight than simply a score on a symptom scale.
In assessing both pain and anxiety towards the end of life, the ultimate goal should be an aggressive and multidisciplinary approach as this is the best way to adequately identify and address the many psychological needs and symptoms that accompany the dying process.
Other articles in this series include:
Part 1: Assessing Pain And Anxiety: Part 1
1Barraclough, Jennifer. “ABC of palliative care: depression, anxiety, and confusion.” BMJ 315, no. 7119 (1997): 1365-1368.
2Block, Susan D. “Assessing and managing depression in the terminally ill patient.” Annals of Internal Medicine 132, no. 3 (2000): 209-218.
3Payne, David K., and M. J. Massie. “Anxiety in palliative care.” Handbook of psychiatry in palliative medicine (2000): 63-74.
4Pessin, Hayley, Barry Rosenfeld, and William Breitbart. “Assessing psychological distress near the end of life.” American Behavioral Scientist 46, no. 3 (2002): 357-372.
5Maguire, P. “Barriers to psychological care of the dying.” British medical journal (Clinical research ed.) 291, no. 6510 (1985): 1711.
6Stoklosa, Joseph, Kevin Patterson, Drew Rosielle, and Robert M. Arnold. “Anxiety in Palliative Care: Causes and Diagnosis# 186.” Journal of palliative medicine 14, no. 10 (2011): 1173-1174.
7Wise, M. G., and S. O. Rieck. “Diagnostic considerations and treatment approaches to underlying anxiety in the medically ill.” The Journal of clinical psychiatry 54 (1993): 22-6.
Patricia Macnair, MBChB, is a clinician at the Royal Surrey County Hospital NHS Foundation Trust. She graduated as a doctor from the University of Bristol (UK) and later completed an MA in Medical Ethics and Medical Law at King's College, London. Dr. Macnair specializes in interface geriatrics and medicine for the elderly at two NHS hospitals in Surrey, UK. With over 20 years' experience, she is also a renowned medical journalist and broadcaster, and has received numerous awards from the Medical Journalists Association for her work.