If you are a family member or a caregiver of a loved one who is receiving hospice care, you may have many questions and concerns about their medications. You may wonder if they are taking the proper medications if they are taking too many or too few, or if they are causing any harm or discomfort. You may also want to know how to make the best decisions for your loved one’s care and quality of life.
This article aims to provide you with some information and guidance on common medications that may cause harm to hospice patients. We will explain these medications, why they may be harmful, and what you can do to ensure your loved one’s comfort and safety. We will also discuss the benefits and risks of continuing or discontinuing these medications and the importance of individualized and patient-centered care.
Hospice and palliative care are specialized types of care that focus on relieving the symptoms and stress of a severe illness. Hospice care is for people who have a terminal illness and a prognosis of six months or less to live. Palliative care is for people who have a chronic or life-limiting illness, regardless of their prognosis. Both types of care aim to improve the patient’s and family’s quality of life.
Harm, comfort, and quality of life may have different meanings. In general, harm refers to any physical, emotional, or spiritual suffering a medication may cause or worsen. Comfort refers to any relief or ease a medication may provide or enhance. Quality of life refers to the overall well-being and satisfaction that a person experiences in their life.
In this article, we will cover several medication classes that may cause harm to hospice patients. We hope this article will help you understand more about these medications and how they may affect your loved one’s care and quality of life. Please remember that every patient is unique and that the best decisions are made in collaboration with the hospice team, the patient, and the family. We encourage you to ask questions, share your concerns, and express your preferences and goals for your loved one’s care.
Acetylcholinesterase Inhibitors
Acetylcholinesterase inhibitors are medications that help improve the memory and thinking of people with Alzheimer’s disease and other types of dementia. They work by increasing the level of acetylcholine in the brain, which is involved in learning and memory. Some examples of acetylcholinesterase inhibitors are donepezil, rivastigmine, and galantamine.
Acetylcholinesterase inhibitors may be harmful in hospice patients because they can cause side effects such as nausea, vomiting, diarrhea, loss of appetite, weight loss, and muscle weakness. These side effects can worsen the symptoms and quality of life of hospice patients, who may already have difficulty eating, swallowing, and moving. Acetylcholinesterase inhibitors may also increase the risk of falls, seizures, and abnormal heart rhythms in hospice patients.
The benefits and risks of continuing or discontinuing acetylcholinesterase inhibitors in hospice patients depend on several factors, such as the stage of dementia, the severity of side effects, the patient’s preferences and goals, and the family’s expectations and wishes. Some studies have suggested that acetylcholinesterase inhibitors may slow down the progression of dementia and delay the need for nursing home placement. However, these benefits may not be meaningful or noticeable for hospice patients with a limited life expectancy and may not value prolonging their cognitive function over their comfort and dignity. On the other hand, some studies have reported that abruptly stopping acetylcholinesterase inhibitors may cause a rapid decline in cognition and behavior, which can be distressing for the patient and the family. Therefore, it may be better to gradually reduce the dose of acetylcholinesterase inhibitors before stopping them completely.
Loved ones with almost any type of dementia in the terminal stage can experience paranoia, agitation with the potential for physical violence and combative behaviors, anxiety that may lead to non-stop crying spells and restlessness if they are on an Acetylcholinesterase Inhibitors for too long.
Peter M. Abraham, BSN, RN — RN Case Manager
There are no clear or universal recommendations or guidelines for acetylcholinesterase inhibitor use in hospice patients. The decision to continue or discontinue these medications should be made on a case-by-case basis, in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on the potential benefits and harms of acetylcholinesterase inhibitors and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Anticoagulants
Anticoagulants prevent or treat blood clots in the veins or arteries. Clots can block blood flow to vital organs, such as the heart, brain, or lungs, and cause serious problems, such as heart attack, stroke, or pulmonary embolism. Anticoagulants interfere with blood clotting, making it less likely to form or grow clots. Some examples of anticoagulants are warfarin, heparin, and apixaban.
Anticoagulants may be harmful in hospice patients because they can increase the risk of bleeding, which can be life-threatening or cause discomfort and distress. Bleeding can occur in any body part, such as the stomach, intestines, brain, or skin. Bleeding can be caused by trauma, injury, surgery, infection, or other medical conditions. Bleeding can also be spontaneous, meaning it happens without any apparent cause. Bleeding can be problematic to detect and treat in hospice patients, especially if they have low blood pressure, low platelet count, or impaired kidney or liver function. Anticoagulants may also interact with other medications or foods that affect blood clotting, such as aspirin, NSAIDs, antibiotics, or vitamin K.
The main risk of anticoagulants on hospice is internal bleeding caused by falls which are extremely common in the last few months of life. Often the internal bleeding is not caught timely, and this can result in dying faster than the terminally ill loved one or family anticipated.
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing anticoagulants in hospice patients depend on several factors, such as the reason for using anticoagulants, the type and dose of anticoagulants, the duration of treatment, the patient’s prognosis and preferences, and the family’s expectations and wishes. Some studies have suggested that anticoagulants may reduce the risk of recurrent blood clots and improve survival in patients with cancer or heart failure. However, these benefits may not outweigh the harms of bleeding and the burden of monitoring and managing anticoagulants in hospice patients, who have a limited life expectancy and may value comfort and quality of life over prolonging survival. On the other hand, some studies have reported that stopping anticoagulants may increase the risk of blood clots and stroke, especially in patients with atrial fibrillation or mechanical heart valves. Therefore, it may be better to adjust the dose of anticoagulants or switch to a safer or more convenient type of anticoagulant before stopping them completely.
There are no clear or universal recommendations or guidelines for anticoagulant use in hospice patients. The decision to continue or discontinue anticoagulants should be made on a case-by-case basis in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on anticoagulants’ potential benefits and harms and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Anticonvulsants
Anticonvulsants are medications that prevent or treat seizures, which are sudden and abnormal bursts of electrical activity in the brain. Seizures can cause changes in movement, sensation, behavior, or consciousness. Some people have seizures because of a brain injury, infection, tumor, stroke, or genetic disorder. Some people have seizures without a known cause. Anticonvulsants work by stabilizing the nerve cells in the brain and reducing their tendency to fire excessively. Some examples of anticonvulsants are phenytoin, carbamazepine, gabapentin, levetiracetam, and valproic acid.
Anticonvulsants may be harmful in hospice patients because they can cause side effects such as drowsiness, confusion, rash, liver problems, and low blood counts. These side effects can worsen the symptoms and quality of life of hospice patients, who may already have difficulty thinking, sleeping, and coping. Anticonvulsants may also interact with other medications or supplements that affect the brain or the liver, such as opioids, antidepressants, or vitamins. Anticonvulsants may require frequent blood tests to monitor their levels and effects, which can be inconvenient and uncomfortable for hospice patients.
Typically, anticonvulsant pills are large and hard to swallow by the terminally ill; please consult your hospice provider if using lorazepam can be as beneficial.
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing anticonvulsants in hospice patients depend on several factors, such as the frequency and severity of seizures, the type and dose of anticonvulsants, the patient’s prognosis and preferences, and the family’s expectations and wishes. Some studies have suggested that anticonvulsants may reduce the risk of seizures and improve comfort and dignity in patients with brain tumors or other terminal illnesses. However, these benefits may not outweigh the harms of side effects and the burden of managing anticonvulsants in hospice patients, who have a limited life expectancy and may value quality of life over seizure control. On the other hand, some studies have reported that stopping anticonvulsants may increase the risk of seizures and withdrawal symptoms, which can be distressing for the patient and the family. Therefore, it may be better to gradually reduce the dose of anticonvulsants before stopping them completely.
There are no clear or universal recommendations or guidelines for anticonvulsant use in hospice patients. The decision to continue or discontinue anticonvulsants should be made on a case-by-case basis in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on the potential benefits and harms of anticonvulsants and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Antidepressants
Antidepressants are medications that may help improve the mood and mental health of people with depression (“Multiple meta-analyses have shown antidepressants to have “no clinically meaningful benefit beyond placebo for all patients but those with the most severe depression.”) and other conditions. Depression is a common and genuine problem that affects how you feel, think, and act. It can cause sadness, loss of interest, guilt, hopelessness, and other symptoms that interfere with daily life. Many factors, such as stress, trauma, illness, grief, or genetics, can cause depression. Antidepressants attempt to work by changing the levels of certain chemicals in your brain, called neurotransmitters, which affect your mood and emotions; in July 2022, the evidence for these mediations came under serious investigation as depression is not caused by a chemical imbalance. Some examples of antidepressants are fluoxetine, sertraline, amitriptyline, mirtazapine, and bupropion.
Antidepressants may be harmful in hospice patients because they can cause side effects such as nausea, dry mouth, constipation, sedation, low blood pressure, and sexual problems. These side effects can worsen the symptoms and quality of life of hospice patients, who may already have difficulty eating, drinking, sleeping, and coping. Antidepressants may also interact with other medications or supplements that affect the brain or the heart, such as opioids, anticonvulsants, or blood thinners. Antidepressants may require regular blood tests to monitor their levels and effects, which can be inconvenient and uncomfortable for hospice patients.
Increasingly more doctors have admitted to the nurses they work with they only prescribe antidepressants because the patient or family asked vs. believing that they work. Yet the risk of serotonin syndrome which can cause lifelong debilitation continues to rise through overprescription of these medications.
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing antidepressants in hospice patients depend on several factors, such as the severity and duration of depression, the type and dose of antidepressants, the patient’s prognosis and preferences, and the family’s expectations and wishes.
There are no clear or universal recommendations or guidelines for antidepressant use in hospice patients. The decision to continue or discontinue antidepressants should be made on a case-by-case basis, in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on the potential benefits and harms of antidepressants and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Diuretics
Diuretics are medications that help remove excess fluid from the body by increasing the urine produced by the kidneys. Some people need diuretics to treat conditions such as high blood pressure, heart failure, or kidney disease. Some examples of diuretics are furosemide, hydrochlorothiazide, and spironolactone.
Diuretics may be harmful in hospice patients because they can cause side effects such as dehydration, electrolyte imbalance, low blood pressure, and kidney damage. These side effects can worsen the symptoms and quality of life of hospice patients, who may already have difficulty drinking, eating, and moving. Diuretics may also interact with other medications or supplements that affect the fluid or electrolyte balance, such as NSAIDs, steroids, or potassium. Diuretics may require frequent blood tests to monitor their levels and effects, which can be inconvenient and uncomfortable for hospice patients.
Diuretics pull fluid from the entire body, not just the area of excess fluid whether that is in the lungs, hands, or feet. Unless your loved one is drinking sufficient water (experts desire 40 to 48 ounces of water per day), diuretics can lead to severe dehydration and acute kidney injury which can lead to chronic kidney damage.
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing diuretics in hospice patients depend on several factors, such as the amount and location of fluid accumulation, the type and dose of diuretics, the patient’s prognosis and preferences, and the family’s expectations and wishes. Some studies have suggested that diuretics may reduce the symptoms of fluid overload and improve comfort and dignity in patients with terminal illnesses. However, these benefits may not outweigh the harms of side effects and the burden of managing diuretics in hospice patients, who have a limited life expectancy and may value quality of life over fluid control. On the other hand, some studies have reported that stopping diuretics may cause fluid retention and worsening of symptoms, such as shortness of breath, swelling, and pain, which can be distressing for the patient and the family. Therefore, it may be better to adjust the dose of diuretics or switch to a safer or more convenient type of diuretics before stopping them completely.
There are no clear or universal recommendations or guidelines for diuretic use in hospice patients. The decision to continue or discontinue diuretics should be made on a case-by-case basis, in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on diuretics’ potential benefits and harms and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Non-steroidal anti-inflammatory drugs (NSAIDs)
Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, naproxen, and aspirin, reduce inflammation and pain. They work by blocking the production of chemicals called prostaglandins, which are involved in the body’s response to injury and infection. Prostaglandins also help protect the lining of the stomach and the blood vessels from damage.
NSAIDs may be harmful in hospice patients because they can increase the risk of bleeding, kidney damage, and stomach ulcers. Bleeding can occur in any body part, such as the brain, stomach, or skin. Bleeding can be caused by trauma, injury, surgery, infection, or other medical conditions. Bleeding can also be spontaneous, meaning it happens without any obvious cause. Bleeding can be problematic to detect and treat in hospice patients, especially if they have low blood pressure, low platelet count, or impaired kidney or liver function. Kidney damage can occur because NSAIDs reduce the blood flow to the kidneys, which can impair their function and cause fluid retention, swelling, and high blood pressure. Stomach ulcers can occur because NSAIDs weaken the protective layer of the stomach, which can allow the stomach acid to erode the tissue and cause pain, bleeding, and infection.
Unless contraindicated, acetaminophen (Tylenol) is among the safest medications for fever or mild pain if you remain at 3 grams or less (2 grams if there are liver concerns) — and for many hospice doctors, if you are looking at a few months to live, even the 3-gram limit may be meaningless.
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing NSAIDs in hospice patients depend on several factors, such as the severity and location of pain, the type and dose of NSAIDs, the patient’s prognosis and preferences, and the family’s expectations and wishes. Some studies have suggested that NSAIDs may provide effective and safe pain relief for some hospice patients, especially those with bone or muscle pain. However, these benefits may not outweigh the harms of side effects and the burden of monitoring and managing NSAIDs in hospice patients, who have a limited life expectancy and may value comfort and quality of life over pain control. On the other hand, some studies have reported that stopping NSAIDs may cause rebound pain and inflammation, which can be distressing for the patient and the family. Therefore, it may be better to adjust the dose of NSAIDs or switch to a safer or more convenient type of painkillers before stopping them completely.
There are no clear or universal recommendations or guidelines for NSAID use in hospice patients. The decision to continue or discontinue NSAIDs should be made on a case-by-case basis, in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on the potential benefits and harms of NSAIDs and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Statins
Statins are medications that help lower the cholesterol level in the blood. Cholesterol is a type of fat that can build up in the walls of the arteries and cause them to narrow and harden. This can lead to problems such as heart attacks, strokes, or angina. Statins work by blocking an enzyme in the liver that makes cholesterol. Some examples of statins are atorvastatin, simvastatin, and rosuvastatin.
Statins may be harmful in hospice patients because they can cause side effects such as dementia, worsening dementia, increased cognitive decline, muscle pain, liver damage, and diabetes. These side effects can worsen the symptoms and quality of life of hospice patients, who may already have difficulty moving, eating, and coping. Statins may also interact with other medications or supplements that affect the liver or the blood sugar, such as antibiotics, antifungals, or grapefruit juice. Statins may require regular blood tests to monitor their levels and effects, which can be inconvenient and uncomfortable for hospice patients.
The real risk reduction of all forms of morality by taking a statin is 0.8%! If the pharmaceutical industry told the truth to the public vs. pushing the relative risk reduction number that seems impressive, would anyone take a statin knowing they could have cognitive issues like dementia or have prediabetes, muscle pain that can interfere with walking including tendon rupture?
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing statins in hospice patients depend on several factors, such as the reason for using statins, the type and dose of statins, the patient’s prognosis and preferences, and the family’s expectations and wishes.
There are no clear or universal recommendations or guidelines for statin use in hospice patients. The decision to continue or discontinue statins should be made on a case-by-case basis, in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on statins’ potential benefits and harms and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Steroids
Steroids, such as prednisone, dexamethasone, and hydrocortisone, suppress the immune system and inflammation. They work by mimicking the effects of natural hormones produced by the adrenal glands, which are located above the kidneys. Steroids can help treat various conditions, such as asthma, arthritis, allergies, cancer, and autoimmune diseases.
Steroids may be harmful in hospice patients because they can cause side effects such as weight gain, fluid retention, diabetes, infections, and mood changes. These side effects can worsen the symptoms and quality of life of hospice patients, who may already have difficulty eating, drinking, sleeping, and coping. Weight gain and fluid retention can cause swelling, breathing problems, and increased blood pressure. Diabetes can cause high blood sugar levels, damaging the eyes, kidneys, nerves, and blood vessels. Infections can occur because steroids weaken the immune system, making fighting germs harder. Mood changes can include anxiety, depression, irritability, and psychosis. Steroids may also interact with medications or supplements that affect blood sugar, blood pressure, or mood, such as insulin, antihypertensives, or antidepressants. Steroids may require regular blood tests to monitor their levels and effects, which can be inconvenient and uncomfortable for hospice patients.
Steroids can have wonderful benefits for a fleeting period of time but need to be re-evaluated frequently because of the risk for increased fluid retention, decreased immune function, and poor wound healing.
Peter M. Abraham, BSN, RN — RN Case Manager
The benefits and risks of continuing or discontinuing steroids in hospice patients depend on several factors, such as the reason for using steroids, the type and dose of steroids, the duration of treatment, the patient’s prognosis and preferences, and the family’s expectations and wishes. Some studies have suggested that steroids may reduce the symptoms of pain, nausea, fatigue, and brain swelling in patients with terminal illnesses. However, these benefits may not outweigh the harms of side effects and the burden of managing steroids in hospice patients, who have a limited life expectancy and may value comfort and quality of life over symptom control. On the other hand, some studies have reported that stopping steroids may cause withdrawal symptoms, such as low blood pressure, low blood sugar, muscle and joint pain, and adrenal insufficiency, which is a condition where the adrenal glands cannot produce enough hormones. Therefore, it may be better to gradually reduce the dose of steroids before stopping them completely.
There are no clear or universal recommendations or guidelines for steroid use in hospice patients. The decision to continue or discontinue steroids should be made on a case-by-case basis, in consultation with the hospice team, the patient, and the family. The hospice team can provide information and advice on the potential benefits and harms of steroids and help the patient and the family weigh their options and make an informed choice. The patient’s comfort and quality of life should be the primary goal of hospice care, and any medication that does not contribute to this goal should be reconsidered and deprescribed if appropriate.
Conclusion
In this article, we have discussed some common medications that may cause harm to hospice patients. We have explained these medications, why they may be harmful, and how to ensure your loved one’s comfort and safety. We have also discussed the benefits and risks of continuing or discontinuing these medications and the importance of individualized and patient-centered care.
We hope this article has helped you understand more about these medications and how they may affect your loved one’s care and quality of life. Please remember that every patient is unique and that the best decisions are made in collaboration with the hospice team, the patient, and the family. We encourage you to ask questions, share your concerns, and express your preferences and goals for your loved one’s care.
If you would like to learn more about hospice and palliative care or about any of the medications mentioned in this article, here are some resources and references that you may find useful:
Palliative Doctors: A website that offers expert advice and answers on palliative care and symptom management.
MedlinePlus: A website that provides reliable and up-to-date health information on various medications and their side effects.
Deprescribing.org: A website that provides evidence-based information and tools on deprescribing, which is the process of reducing or stopping medications that may no longer be beneficial or may be causing harm.
