Submitted by Jennifer Burke, DO
Whenever a patient is placed on comfort or hospice care, the care does not stop. Often these patients need more care, but it’s different from the curative care that we as clinicians are used to providing in the hospital setting.
Common concerns at end of life are anorexia, dyspnea and pain. When it comes to symptoms at end of life, most can be relieved with position changes, non-invasive modalities, and comfort medications.
Anorexia is a common symptom at end of life. Chronic pain, sores in the mouth from infection or chemotherapy and problems with gastric motility can cause people to not eat. Steroids, megestrol, and dronabinol are common appetite stimulants that can help increase weight once treatable causes have been ruled out. In addition to treatable causes, patients often stop eating because of their illness, not because of their desire. Often they develop the anorexia-cachexia syndrome which is poorly understood but involves cytokines and other neuroendocrine proteins that cause a wasting syndrome. Artificial nutrition, either PEG feedings or TPN can worsen the patient’s discomfort. Psychologically patients, families, and loved ones have emotional ties to eating. Instead of cajoling or force-feeding, substitute mouth and lips swabs, light massage or small amounts of desired food. This is the time for the full-fat ice cream!
Dyspnea is often a concerning symptom from patients, providers, and loved ones. Sometimes symptoms can be managed without medicines. People can use cool rooms, sheets instead of blankets to cover them up, and a fan blowing on them to increase the air they are receiving. Alert patients who feel better with oxygen on them should be able to receive oxygen by nasal cannula. If these maneuvers do not help, patients often need anxiolytics, such as lorazepam or diazepam, or opioids for symptom control. Opioids act on muscles to relax them and allow for more comfortable breathing.
In addition to dyspnea, pain is also a very concerning symptom for patients. Many patients with advanced diseases will have pain. There are concerns about “addiction” and that opioids at end of life “hasten” death, and as such families and sometimes providers are hesitant to prescribe them. There are no ceiling doses of opioids in pain management at end of life, but they must also be used ethically.
Sometimes patients require continuous opioid infusion at their end of life. Most commonly morphine is used, but it is not uncommon to see dilaudid or fentanyl used due to patient tolerance, preference or allergies. Writing an order to “titrate to comfort” is unacceptable as it places the clinicians at ethical and legal risk. In these situations, Opioid infusion pumps are used. Although these are ordered under the PCA designation, they are not patient controlled analgesic pumps. They may be pushed, for symptom management by nursing as authorized agent.
The reasoning behind opioid infusion pumps is two-fold. First, opioids can only be run as infusions by using the opioid infusion pump (formerly PCA). Secondly, patients often need frequent bolus doses for comfort, but do not require large doses to maintain comfort. When using IV loading doses to achieve acute uncontrolled pain, the basal rate should be about one fifth of the total dose given to relieve the pain. When titrating doses, it’s reasonable to go up by 50% in moderate to severe pain and 25% in mild pain, irrespective of the starting dose, but the basal rate should never be increased by more than 100%.
Both non-pharmacologic and pharmacologic methods can be used in pain control. A comfortable environment, soft lighting, soft music or any mechanism the patient has used in the past for coping with pain (visualization, etc) can help with non-pharmacological pain relief.
Providing comfort at end of life can mean so much to a patient and family in distress. There are non-pharmacological and pharmacological ways to ensure comfort and dignity to those who suffer.
- Main Line Health, Inc Analgesic (Pain Medication) Guidelines
- Department of Nursing Policy and Procedure Manual Opioid Infusion Pump (formerly known as Patient Controlled Analgesia (PCA)/Analgesic Infusion Pump, Continuous and Intermittent).
- Ross, DD, Alexander CS. Management of Common Symptoms in Terminally Ill Patients: Part I. Fatigue, Anorexia, Cachexia, Nausea and Vomiting. Am Fam Physician. 2001 Sep 1: 64(5): 807-815
- Ross, DD, Alexander CS. Management of Common Symptoms in Terminally Ill Patients: Part II. Constipation, Delirium and Dyspnea. Am Fam Physician. 2001 Sep 15: 64(6): 1019-1027