Managing pain in dying patients
Interview with Dr. Kathleen M Foley
Dr. Kathleen M Foley
Pain.com: How common is pain as a symptom in dying patients?
Dr. Foley: If we look across all disease trajectories from cancer to AIDS, to chronic neuorodegenerative diseases, pain is a common symptom in dying patients. Data from the SUPPORT Study (A Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment) revealed that 50% of adults with serious life threatening illnesses who died in hospital, experienced moderate to severe pain in the last days of life. Data from studies on dying children as well as elderly cancer patients in nursing homes all suggests prevalent pain symptoms which are both under assessed and under treated. In dying patients it is critical to improve the quality of their living as they are dying. Improving pain relief is one way to do so.
Pain.com: What are the common approaches to managing pain in a dying patient?
Dr. Foley: Pharmacologic approaches using non-opioid, opioid and adjuvant analgesics are the common approaches used to manage pain in a dying patient. Detailed guidelines for the management of pain in patients with cancer, AIDS, the elderly and children provide a stepwise approach that begins with the careful assessment of the pain's etiology and pathophysiologic mechanisms and moves to a treatment approach focused on maximizing analgesia and minimizing side effects. It often requires combinations of drugs to balance analgesia and side effects.
The goal of pain therapy is to provide the patient with adequate relief to assure their quality of living and to allow them to die relatively pain free. The specific choice of drug and route of administration is dependent upon the patient's pain syndrome, prior non-opioid and opioid exposure, cognitive status and ability to swallow. A drug therapy regimen needs to be individualized with a particular focus on convenience and minimizing side effects.
Data from studies in cancer patients suggests that during the progression of illness, they may require multiple rotations of opioid drugs and routes in order to obtain effective analgesia with minimal side effects. Our own data suggest that during the course of their illness, cancer patients will require at least two if not three routes of drug administration beginning with oral drug therapy and then switching to either parenteral drug therapy or epidural or intrathecal therapy.
Are there issues unique to providing appropriate pain management for the dying patient? There are some special issues: one s maintaining the patient's cognitive function to allow them to remain competent for as long as possible. All attempts should be made to try to maximize cognitive function in such patients in order to give them the opportunity to say their last goodbyes. 72% of Americans report that they want the opportunity to say goodbye. This issue is equally important for family members and caregivers.
For some patients, adequate pain relief is not possible without some loss of cognitive function or some degree of sedation. In such cases, the treating physician should discuss with the patient and family the consequences of increasing the opioid drug therapy to provide pain relief to allow the patient to acknowledge their willingness to forgo their cognitive status for adequate pain relief. Such discussions can be enormously helpful to both physicians as well family members who can then direct therapy that is totally concurrent with the wishes of the patient.
In those family members who have not had sufficient time to come to terms with the fact that their loved one is dying, they often resist increasing the doses for analgesia because they fear that they will lose the opportunity to speak with their family member. Family discussions, and open physician, patient and family communication are all critical to providing the appropriate balance in maintaining the dying patient's quality of living and at the same time respecting their perspectives on whether sedation is acceptable or not acceptable to them.
In short, developing an analgesic regimen for a dying patient is more that instituting guidelines. Drugs and doses need to be adjusted to the needs of the individual patient.
Pain.com: Do you ever consider invasive approaches in the management of dying patients?
Dr Foley: Individualizing pain therapy for dying patients is the rule. In some instances patients with severs neuropathic pain secondary to bilateral lumbosacral plexopathies or brachial plexopathies or diffuse abdominal tumor infiltration may respond to combinations of epidural opioids and local anesthetics. In such instances even in the patient's last days of life and most commonly for those who are hospitalized, the use of epidural catheters with combinations of local anesthetics and opioids can provide patients with pain relief and allow for the reduction in systemic opioid doses, in some instances improving their cognitive functioning.
In situations where patients have several weeks to live using primary approaches such as radiotherapy to a vertebral body metastases or neural blockade of one or several intercostal nerves or even percutaneous nerve resection can be appropriate to provide the patient with dramatic reduction in their pain. Epidural catheters can be placed in patients at the bedside and maintained percutaneously at home safely for a week or more. Such approaches may be particularly helpful in a difficult to manage mixed nociceptive neuropathic pain syndromes.
Pain.com: How can clinicians distinguish escalating pain from existential distress in this population of patients?
Dr. Foley: In patients reporting escalating pain associated with significant psychological distress it can sometimes be difficult to fully distinguish the contributions of the pain symptomatology separate from those associated with the patient's significant psychological distress and suffering. In this setting it is important to assess the patient medically, neurologically as well as psychologically. This involves re-examination, repeat history taking and investing time to tease apart the patient's fears, concerns and mood state. It is particularly helpful to directly ask the patient to distinguish between their pain and their degree of suffering. Some patients do not make such distinctions but when the question is asked they begin to think about it and can provide insights that can help the clinician develop a differential diagnosis. Asking the patient about what they fear, learning what the patient understands about their disease and prognosis, knowing if the patient has ever seen anyone die and what that was like and openly asking what fears they may have about their own death are the types of questions to ask in interviews with patients to tease apart their physical symptoms and psychological symptoms.
In patients with advanced cancer and pain directly asking patients whether they are depressed is a useful first step in clarifying their degree of psychological distress. Some patients may report a desire for a hastened death. This request needs to be fully clarified to decide whether this is an actively suicidal patient or one that is beginning to look at what potential choices and options they have for care at the end-of-life. Pain is a common symptom in those patients who are suicidal as well as those patients who are depressed. However both depression and lack of social supports appear to be the more important correlates associated with such serious psychological distress.
Recent approaches focusing on implementing dignity conserving therapies and meaning centered approaches for care along with the use of antidepressants provide a therapeutic approach using drug and non-drug approaches to address these serious symptoms in patients with advanced life limiting disease.
If the patient reports moderate to severe pain it can be very helpful to titrate the patient's analgesic regimen to maximize their analgesia. In some instances this may dramatically improve the patient's psychological state and help to clarify the answer. In those situations, where it does not, and in every situation with a dying patient, helping them understand their distress and engaging them in helping to provide therapeutic approaches is the first step in developing a treatment regimen.
Pain.com: What are the ethical issues involved in aggressive pain management in dying patients?
Dr. Foley: For both clinicians and patients there is confusion about whether aggressive pain management approaches are a form of euthanasia or physician-assisted suicide. In the 1997 U.S. Supreme Court decision on physician-assisted suicide, the court strongly endorsed aggressive palliative care measures for pain and symptom management and clearly distinguished them from physician-assisted suicide and euthanasia. The aggressive use of opioids to provide patients with adequate comfort and relief of suffering is recognized as appropriate palliative care. In using opioid analgesics in a dying patient, both patients and family should participate in an open discussion about the benefits and risks of such drugs and the rationale for their use. Because clinicians are not often well versed in the use of opioids and in increasing doses to manage a pain crisis in an imminently dying patient, such situations are often misunderstood by clinicians as hastening a patient's death. Open discussion among physicians, nurses and families with clear documentation of the goals of care are the necessary steps in providing a higher quality of patient care at or near the end of life.
In dying patients who are on intravenous doses of opioids, clear guidelines should be written about their use including clear indications for dose increases with the goal of care patient comfort. Careful titration should be dictated by the needs of the patient through careful observation of their pain symptomatology or evident distress. Simply increasing doses without clear indications should be strongly discouraged. Continuous infusions are preferable to intermittent intravenous boluses in order to limit the concern of nurses that they may have caused the death of the patient because they gave the last dose of drug.
Pain.com: What role do family and caregivers play in assessing adequate pain management in the care of the dying patient?
Dr. Foley: Family and caregivers play a critical role in both advocating for and supervising pain management in the patient dying at home or in a hospice program. They need to recognize the risks and benefits of such therapeutic approaches and be participatory in deciding and choosing pain relief strategies. Families and caregivers need to know about doses, appropriate titration and about safely securing a drug supply for patients at home. These educational initiatives are commonly provided through home care nurses and hospice programs.
References
1. Foley KM. Clinical Crossroads. A 44 year old woman with severe pain at the end of life. JAMA,1999:281(22), 1937-1945, 1999.
2. Foley KM. Management of Cancer Pain. IN: Cancer: Principles and Practice of Oncology, Fifth Ed. Vincent T. DeVita, Samuel Hellman, Steven A. Rosenberg (eds), Lippincott-Raven, Philadelphia. 1997, 2807-2841.
3. SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. JAMA 1995: 274:1591-1595.
4. Cherny NI, Coyle N, Foley KM: Suffering in the advanced cancer patient. Part I: definition and taxonomy. Journal of Palliative Care. 1994: 10(2):57'‘70.
5. Cherny NI, Coyle N, Foley KM: The treatment of suffering when patients request elective death. Journal of Palliative Care. 1994:10(2):71'‘79.
6. Breitbart W, Rosenfeld B, Pessin H, Kain M. Funesti-Esch J, Galietta M, Nelson CJ, Brescia R. Depression, hopelessness and desire for hastened death in terminally ill patients with cancer. JAMA 2000;284:2907-2911.
7. Chochinov H. Dignity Conserving Care. A New Model of Palliative Care. Helping the Patient Feel Valued. JAMA 2002:2253-2260.
8. Cherny NI, Chang V, Frager G, Ingham JM, Tiseo PJ, Popp B, Portenoy RK, Foley KM: Opioid pharmacotherapy in the management of cancer pain: a survey of strategies used by pain physicians for the selection of analgesic drugs and routes of administration. Cancer 1995: 76(7):1283-1293.
9. Khojainova N, Santiago-Palma J, Kornick C, Derby S, Fischberg D, Payne R, Manfredi P. Pitfalls of Opioid Rotation: substituting another opioid for methadone in patients with cancer pain. Pain, 2002; 96:325-328.
10. American Cancer Society. When the Focus is on Care. Foley KM, Back A, Bruera E, Coyle N, Loscalzo M, Shuster JL, Teschendorf B, Von Roenn JH (eds). American Cancer Society. Atlanta, GA.
11. Voltz R, Foley KM. Sedation in the imminently dying patient. In: Palliative Care in Neurology, Oxford University Press, London, England, 349-355, 2004.
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