Living with Illness
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- Palliative Sedation / Sedation for Palliative Purposes
- Symptoms/What to Expect
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- Remembering and memories
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- Final Days
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Asked & Answered
Fever is a common symptom at the end of life. It can mean there is an infection, which often indicates an end-of-life pneumonia. But fever may also be associated with other causes, such as a cytokine-induced fever produced by a cancer, which is referred to as “tumour fever.”
The investigation and/or treatment of fever is based on life expectancy (is the patient imminently dying?), the patient's goals or wishes related to his or her care, and the degree of distress and discomfort associated with the fever.
Over the years, health care providers have debated whether to treat fever even in healthy patients. Is fever a response to an infection, or is it actually a part of the body’s way of ridding itself of an infection? It is now known that increasing body temperature by one to four degrees Celsius can impair micro-organism replication and enhance the macrophage killing of bacteria.
At the end of life, the question becomes whether the fever is making the patient uncomfortable. If the patient's condition has deteriorated beyond the need to determine the cause of fever, and the patient shows no signs of distress, there is no need to treat it. If the patient is still more alert and/or seems distressed by the fever, attempts should be made to keep him or her more comfortable. In either case, it is important to communicate with the patient to determine if he or she is uncomfortable. Also important is communicating with the family. Discuss their understanding of and expectations about fever management.
When a patient is having difficulty swallowing or is no longer able to swallow oral medications, the ease of administration and the risks of different agents should be weighed. Acetaminophen is safe in most patients and is the most common pharmacologic agent used to treat fever. However acetaminophen is not available to give parentally. It is available in tablets, caplets, liquid and suppositories. Using rectal suppositories may seem too invasive or cause increased discomfort for the patient and perhaps for family caregivers. Using suppositories may also place the patient at increased risk (for example, they may cause neutropenia in a patient not imminently dying). Other medications used to treat fever are the nonsteroidal anti-inflammatories, such as ibuprofen and naproxen. One of these agents, Ketorolac, can be given intravenously and is shown to be effective in fever control. However, these options have risks of gastrointestinal bleeding and renal impairment. Corticosteroids have been shown to have antipyretic and anti-inflammatory effects, but their risks may be somewhat higher. If fevers are recurrent, you may need to schedule medication to avoid significant swings in body temperature and related discomfort. As in all palliative care situations, you must weigh the benefits against the risks of treatment.
If suppositories are being used for fever management and the patient experiences increased pain when being moved or repositioned, you may need to consider other factors in addition to the above:
- Is there a role for short-acting analgesia (such as sublingual or intranasal fentanyl) for incident pain management before turning or providing care?
- Can suppository administration be timed with regular turning or repositioning?
Nonpharmacologic interventions include maintaining a comfortable ambient air temperature and air movement, providing cool cloths to the forehead, and ensuring linens are light and dry. Cool liquids or ice chips may be helpful for patients who are alert. Mouth and lip care is important for those who are not.
While aggressive cooling methods, such as a sponge bath with tepid water, ice packs or cooling blankets, and electric fans and air-conditioning, are effective in reducing fevers, they should be avoided because they tend to cause shivering, vasoconstriction, and often more discomfort.
The palliative care textbooks listed below provide general information on fever management and approaches to care.
Hanks G, Cherney NI, Christakis NA, Fallon M, Kaasa S, Portenoy RK, eds. Oxford Textbook of Palliative Medicine, 4th ed. New York, NY: Oxford University Press; 2010.
Ferrell BR, Coyle N, eds. Oxford Textbook of Palliative Nursing, 3rd ed. New York, NY: Oxford University Press; 2010.
Walsh TD, Caraceni AT, Fainsinger R, et al. Palliative Medicine: Expert Consult. Philadelphia, PA: Saunders Elsevier; 2009.
Each person’s disease progresses in its own way, and it’s not always possible to predict what can happen as a disease progresses. Someone with colon cancer may have symptoms specifically related to the tumor in the colon and may have symptoms caused by the general effects of cancer on the body. When cancer spreads to the lungs and liver the person may also experience symptoms related to the tumors in these areas.
Pain may occur in the areas where the cancer is located. The person may also experience side effects related to medications.
Someone with colon cancer may experience abdominal pain and tenderness. The person may have blood in the stool or experience diarrhea, constipation, or other changes in bowel habits. Sometimes a tumor in the colon may cause more serious problems such as an intestinal obstruction.
Someone who has a tumor in the lungs may experience shortness of breath, also known as dyspnea. Coughing may be present throughout the illness or at advanced stages.
When cancer affects the liver, jaundice may develop, which makes the skin and eyes turn yellow. This indicates that the liver is not clearing bile as it should, and toxins that the liver normally clears are building up in the bloodstream. If the liver is not functioning well, a person may become drowsy or confused.
Someone with colon cancer may also experience symptoms that are common to most cancers generally, which affect energy, strength, appetite, breathing and responsiveness.
Medications can help with many of these specific symptoms. The symptoms usually can be controlled so the person is comfortable.
The liver is the second largest organ in the body. It is located in the right upper abdomen under the rib cage. The liver has many important jobs. It filters harmful substances from the blood and converts food and fluid into the nutrients and energy the body needs. It also helps clot the blood.
Causes of liver disease include viral hepatitis, autoimmune disorders, cancer, obesity, alcohol, drugs, toxins and genetics. Changes that can occur with end-stage liver disease include:
- increased risk of bleeding;
- buildup of fluid in the abdomen; and
- reduced brain function.
Jaundice is a buildup of bile in the body that causes the skin and eyes to turn yellow. Bile contains a pigment called bilirubin that causes this yellow colour. Jaundice is a sign that the liver can’t move bile to the intestine, which removes it from the body. Sometimes the buildup of bilirubin can be treated with a stent to keep the bile duct open. The person’s health care team may also suggest inserting an external tube to drain bile out of the liver. A buildup of bile can also cause itchiness. Itchiness can be very distressing and difficult to treat. But the person’s doctor can prescribe medications that may help manage this symptom.
When the liver can no longer make proteins to help clot the blood, the person’s risk of bleeding and bruising may increase. Changes may also occur along the person’s gastrointestinal tract, such as the development of enlarged veins in the lower part of the esophagus. These enlarged veins can rupture and pose an increased risk of bleeding. As a result, the health care team needs to consider the risks of bleeding in the person’s care plan.
Fluid buildup in the abdomen can develop and be uncomfortable. It may cause shortness of breath if there’s pressure on the diaphragm. Fluid buildup may also cause nausea, loss of appetite, and abdominal and back pain. The person may also be at risk of developing an infection when this fluid is present. But the health care team can often drain the fluid. This will temporarily reduce abdominal and back discomfort, shortness of breath and nausea. The fluid may come back in a few weeks (occasionally sooner). But the team can drain it again. The person’s doctor may prescribe a diuretic. This is a medication that helps the body get rid of unwanted fluid. The doctor may also prescribe an opioid (pain medication) to help relieve discomfort and shortness of breath and an anti-nausea medication. Fluid buildup may also occur in the person’s feet and legs.
Another complication of end-stage liver failure is reduced brain function. This is because toxins (such as ammonia) build up in the blood, causing confusion. The person may be unable to tell night from day. He or she may also display irritability and personality changes, or have memory problems. As brain function continues to decline, he or she will become sleepy and increasingly confused. This state can progress to unresponsiveness and coma. Although there is medication that may help reduce confusion, in the final days of liver failure, it will be less useful. The doctor may then prescribe medications to calm the person and maintain his or her comfort and dignity.
Other symptoms of end-stage liver disease include:
- muscle cramps;
- trouble sleeping at night;
- decreased appetite and intake of food; and
As liver function declines, certain medications can further harm the liver or build up in the bloodstream, causing side effects. This concern requires extra attention from the person’s health care team.
Your friend most likely needs to talk about his feelings and frustrations. Listening may be the support he needs the most. Consider offering to call regularly to check in. Ask what time is best to call, as he likely has a schedule that needs to be kept. Also ask how often he’d like you to call. He may be busy, and can only manage one call a week, or he may really need support and want you to call every other day. You can also ask at the end of each call when it’s best to call next, as his needs may vary. By asking, you can be assured that you’re supporting him in a way that works for him.
Many people find it hard to talk about dying and illness and avoid any discussion at all. Take your lead from your friend. Talk about whatever he wants to talk about. Don’t be afraid to ask about his dad’s illness, but also be willing to listen to what else he has to say. It’s good to take a break from the illness and talk about other things.
If you feel you want to "do something," even if you can’t be there physically, ask your friend what he needs and what you can do. You may be surprised by what he says. You may be surprised also by what you can do even from a distance. Offer something small to start. You may ask if his dad has a favorite treat or flowers you can have sent to their home. You can write letters or emails or send a small scrapbook based on shared times and memories. These things don’t take much time, but they show you’re thinking of them, which can give much comfort.
The important thing to remember is that your friend is still the person he’s always been, even in these difficult times. Keep the lines of communication open, and if you have questions, don’t be afraid to ask.
The illness or death of a student has a significant emotional impact on other students and teachers in the school or classroom. Providing opportunities to talk about the situation is part of the grieving and healing process for everyone. The information below provides some strategies for coping with a student’s illness or death.
When a student is ill:
- Help create a care plan. While usually developed by the family and health care providers, a care plan that includes the participation of school staff can greatly benefit an ill student. Build in time for updates so you can discuss concerns or questions as they arise. Be sure to adjust the plan as the student’s health status changes.
- Develop an action plan for situations in which a student becomes ill or whose condition worsens. Make sure you have procedures for handling medical emergencies, a sudden deterioration in the student’s condition, the student’s pain or other symptoms.
When a student is dying:
- Recognize and acknowledge the emotional impact a life-limiting illness can have on school staff and students. Include time in every staff meeting to discuss how people are coping and encourage your colleagues to access resources such as counselling.
- Enlist the help of the family to determine what information needs to be shared (and when) with other students. Information delivered at the right time can help students prepare for changes in the dying student’s condition, and encourage them to talk and behave appropriately around the student. Openly acknowledging the illness and being honest about what is known will likely make dealing with the student’s death less traumatic for the entire school. Health care providers are often available to speak to a class or the student body about what to expect as the student’s illness continues to progress.
- Consider how information about the death of the student will be shared with the other students and their parents. Consider a plan for providing support should the death of a student occur. Organize the resources that would need to be accessed, how students will be told, and what will be communicated.
When a student dies:
- Take action as soon as the death occurs. The impact of a death is more significant if it happens at school and is witnessed by other students or staff. Immediately bring in professional counselling teams to debrief with students and staff. Make sure that students and staff have access to counselors and psychologists.
- Recognize the value of the student who died. Conduct a formal or informal memorial service. Some ideas include:
- planting a memorial tree;
- building a play structure in honour of the student;
- sending the family a memory book developed by the students (parents have found this particularly touching);
- organizing a memorial service on the anniversary of the death;
- planning a fundraiser to support a charity (such as an organization meaningful to the student, such as one that supports a particular disease or provides specific equipment or services used by the student);
- developing a scholarship in the student’s name.
You will find additional resources developed specifically for schools in the Books, Links and More section of our website. Some examples include:
- Loss, Grief and Growth - Educational Project Inc. is an online resource prepared by Dr. John Morgan, Milton Orris and Richard J. Paul. It is intended to help educators support students in the classroom when they experience the loss and grief associated with death. This free resource includes information, strategies and suggestions presented in specific grade clusters. It is available in English and French.
- Good Grief - A Teacher's Resource Guide for Bereaved Students was created by Hospice Calgary as a resource for classroom teachers. This book offers practical suggestions for supporting bereaved students and effectively communicating with their parents. The book outlines teaching interventions and classroom activities related to grief and loss.
- A Child's View of Grief: A Guide for Parents, Teachers, and Counselors, by Alan D. Wolfelt, explains how children and adolescents grieve after a loved one dies and offers helpful guidelines for adults.
Jellinek MS, Uchenwa DO. When a student dies: Organizing the school’s response. Child Adolescent Psychiatric Clinics of North America. 2012; 21:57-67.
Discussion with children about death and the rituals around death need to be honest and open. Children need this because they can sense what’s going on around them. Honest answers to their questions can minimize their fears.
Before you discuss cremation, talk about death in simple terms. You may say that death means someone is no longer breathing, is not alive, can’t experience things in this world and is dead. It’s important to use the words “dead” and “died.” Terms such as "loss", "in heaven" or "passed away" may confuse children. If the child was present when the death happened, it’s good to review events simply. Children may feel they’re at fault somehow, and it’s important to assure them that they’re not to blame for the death. Children may have some ideas about illness, death and funerals that seem strange to adults. These thoughts need to be clarified gently, with simple explanations. It’s also crucial to understand that children need repeated discussion of issues around death. They may ask certain questions over and over again. It can be hard emotionally for adults to answer the same questions repeatedly, but it’s important for the children.
Use information that’s appropriate for their age. If you have several children close in age, it’s best to talk with them together. This creates an open environment, which promotes discussion and questions. These discussions can be very tough for parents. Keep in mind that it’s okay to show emotion; it shows children that emotions are a natural part of grieving. You and your children may find it helpful to have someone with you when you talk. This could be a friend, someone the children know or a health care provider who can answer questions.
When you do talk about cremation, keep things simple. Cremation is just one part of death and grieving. There are different views on what’s best to say. Some people don’t want to talk about fire and burning, while others do use those words. Parents usually know what their children can handle and the words that are best for them. Whatever words you use, make it clear that the person who died does not suffer in the cremation process because they are dead and are unable to feel.
If you plan to keep the ashes in your home, make your children comfortable with that. It helps to show them the ashes, as it makes the contents of the urn very real to children. Explain that the ashes are what’s left of the person who died. You may want to decide together where the ashes will be kept. This helps children realize the importance of the ashes and their significance in your home. It also gives them a chance to identify a location that’s special to them or to a particular memory.
There are other containers available to store ashes. Several small urns can be used so the ashes can be divided and kept in several places. Necklaces that contain ashes can be a symbolic way to keep the loved one close. There are also teddy bears with heart necklaces containing ashes that children can keep in their rooms. Discussing the relevance of ashes is the key to stimulating discussion and helping them remember the person who died.
If your children are young, an excellent way to promote conversations about these difficult subjects is to have them draw, or to read to them from children’s books about dying. You can talk about the drawings or the stories, and relate them to what’s happening in their lives.
Few of us have much experience talking about death and dying. It’s normal to be afraid of saying the wrong thing and upsetting someone. If we don’t know what to say, we often don’t say anything and avoid the whole situation. This may be why families of people who are dying notice that friends no longer call or visit. Yet, the time when people are dealing with death is when they most need the support of friends.
The most helpful thing you can do is to listen and follow the lead of the person you’re talking to. Be attentive to all levels of communication. These can give you signs of what someone is comfortable discussing, and what areas are best avoided.
It’s okay to ask about your friend’s mom, her illness and general questions about what’s happening. If asking for details creates discomfort, be ready to change direction. It’s okay to ask if there’s something in particular the person wants to talk about. There may be memories or experiences to be shared. If you’re not sure about the direction of the conversation or about the meaning behind what’s been said, just ask.
Think about what may help your friend deal with what’s happening. Often simply being there to listen is enough. Sometimes other kinds of support are welcome also. If there’s something you can do, let your friend know it. Offer to help instead of waiting to be asked, as people often don’t want to be a burden. Ask in a genuine way what you can do, or suggest something specific.
One comment to avoid is "I understand what you’re going through." This implies that you’ve been through the same situation and felt the same things. It minimizes the other person’s experience and puts the focus on you. The other person may get the impression that you don’t understand, and that there’s no point in talking. You may say instead: “I don’t know how it feels to be in your situation, but I’m here to support you.” In general, it’s most helpful to focus on the experience of your friend and her family, and on the ways you offer comfort or help.
It’s normal to feel a mix of emotions during bereavement. Feelings of grief can come up at unexpected times, and holidays can be a trigger. The pressure of getting into the spirit of the season can add to the difficulties and churn up even more emotions.
Some people who are grieving find it reassuring to participate in traditional holiday activities, while others may find it too difficult. None of you should feel guilty for how you’re feeling. Each of you has your own way of coping, and each of you has to find what’s best for you.
It probably helps everyone to expect the holiday season to be different without your brother. These are things that some families have found helpful during this time:
- Plan ahead and incorporate memories of your brother into the plans;
- Find ways to give to others in need;
- Begin new traditions;
- Do something completely different from anything you’ve done before.
It’s important to realize that celebrating the holidays and enjoying yourself is not a sign of disrespect for your brother. Acknowledge that grief may be a guest during the holidays. This is vital for everyone, so you can feel comfortable sharing memories and emotions.
This response is based on what we have learned from people who have gone down the road you are on now. Some things will fit for you and some things won't. The most important thing, in our view, is to know that there is no one right way to cope.
The news that someone has less than a year to live can be overwhelming for the person who is told it and for those close to him/her. It's hard to think about anything else. Everything in you wants to cry, “No!” Panic, sadness, anger, or helplessness may well up and overflow at almost any time. Nothing can be the same from this point on. Most of us at some level don't want to believe it, and we may deny or avoid the reality. This is our human way of protecting our self.
In addition to this common reaction, you and your husband may have very different ways of responding or coping. Some people are very practical and matter-of-fact, and approach things head on. Others may be immobilized and unable to look at the realities, or they need to do it in their own time. A person once said facing a terminal diagnosis is like looking at the sun, you can't do it steadily for a long period of time.
Once the initial shock sinks in, you start to see the realities of life again. You still have to deal with the ordinary things – meals, dishes, laundry, bills, shopping, repairs, and perhaps much more. You probably also have to look after lots of new things because of your husband’s illness – new areas of responsibility, arranging for the help he needs for medical and physical needs, making decisions about future care, updating wills, responding to concerned family members and friends. There seem to be too few hours in a day to do it all, and so much to learn in a short time. You cannot expect yourself to know everything you need to know at the start, nor to learn it all quickly at such a stressful time.
Don’t try to deal with it all at once. Talk with your husband, and perhaps others you trust, and decide what is most urgent. If you break the pressing challenges into smaller chunks they seem manageable. Plan for the future, but rather than focussing on future problems, take things one day at a time. Someone once said, "living in the present, takes on a whole new meaning" in these circumstances. Above all, be patient with yourself. You are learning a lot and doing a lot, much of it new, at a very stressful time.
No matter how many practical things call for attention now, the single most important thing during this time is to be attentive to your husband. Be as emotionally close to him as is comfortable for the two of you. Let him know you want to make the most of the time you still have together, and that you want to be as supportive as possible. You could say something like this: "I love and care about you, and do not like to see you going through this difficult situation. Please know that you are not alone and I am here for you whenever you need me.” Such words are reassuring, and leave the conversation open for discussions of struggles.
Communication is a big part of coping. Often we feel a need to protect one another by not discussing painful subjects. Yet, while it is important to respect each other's individual way of coping it can help to take a "we're in this together" approach, and talk openly about what is happening. Sometimes we may use a great deal of energy to hold back our feelings; if we can be open with each other, it sometimes actually frees up some energy to live better.
Regularly invite your husband to share his feelings about what is happening. Be prepared for them to vary wildly from day to day, even moment to moment. Make time for the two of you to talk about what is most important to each of you.
- Spend time reminiscing about the good times and bad times you’ve shared.
- Affirm and celebrate what you have created or built together.
- Talk openly about what you mean to each other.
- Discuss concerns each of you has about how you will cope after his death.
Your conversations and times together may not always be easy and may sometimes be upsetting. However, if you stay focussed on what you mean to each other in the midst of all that is happening, this can be a deeply satisfying time that also helps to prepare both of you for losing each other.
This Virtual Hospice article offers some tips on listening to and talking with someone facing death:
What Do I Say?
We've also learned from people that it is always possible to have hope. A big part of coping is redefining hope. We go from hoping for a cure to hoping for living longer, to hoping to be able to spend time together. You may find that this discussion of hope has ideas that apply to you:
The stress of caring for your husband and distress at the thought of your coming loss may affect your ability to cope and to help your husband. One of the most important ways you can help him is to take good care of yourself – you will not be able to help your husband cope with his progressing illness if you become ill or are overcome by exhaustion. Self care includes taking some time for yourself to do the things you enjoy. It may also help to talk about your feelings and concerns with someone you trust. It is especially important to know and accept that you cannot meet all of your husband’s needs by yourself - accept help from others who wish to be involved. For more information on caring for yourself see this Virtual Hospice article:
This handbook is an excellent resource for family caregivers and is available free of charge:
with you. Grief can occur before a death as well as after. People living with someone's terminal illness often experience what is called anticipatory grief. This kind of grief ahead of death can be confusing and painful. We sometimes don’t want to give in to our feelings of loss and we try to stay positive. Yet the feelings are there, and anticipatory grief may be a way in which we are being prepared for what lies ahead.
This article may help you understand the grieving process, including anticipatory grief.
You may want to check out the answer to this question from someone also dealing with grief:
Finally we encourage you to seek out support along the way. It is important to have friends or family who accept you as you are and accompany you consistently through the ups and downs. Support can include information, help with care and other tasks, and someone to talk with, to share concerns and questions, and to feel heard. You could do this with a friend, family member, volunteer or professional counsellor. Counselling can help you process thoughts and feelings, alone or with your husband or family.
Also consider help from health care providers and volunteers. There are likely resources in your community available to you and your family. There may be a palliative care program, hospice palliative care association or grief support group in your area. Such organizations can usually point you to useful resources and helpful programs for patients and families, before and after the death of a loved one. You can also look for resources in our cross-Canada directory:
When weighing end-of-life interventions in progressive life-limiting illness, it is usually helpful to consider the hoped-for goals and whether the intervention is expected to achieve them. With feeding, there are various goals people might seek, such as:
- Preventing hunger.
- Preventing malnutrition―Malnutrition is a physiological term and does not mean that hunger is also present. In advanced life-limiting illnesses (such as cancer and dementia), as death nears, there is compromised nutrition, but rarely is there significant or persistent hunger.
- Preventing "starving to death"―This is different from malnutrition. "Starvation" evokes images of hunger and suffering, of being deprived of food although desiring it. It is an emotionally laden term, and is strongly tied to a person's experience of the situation. In contrast, malnutrition is a more clinical term describing the physiological state described above.
- Increasing strength, energy and functional status.
- Living longer.
- Demonstrating a continued professional or personal commitment to the patient by nurturing, not abandoning, him or her.
- Maintaining a consistent moral or religious framework that promotes feeding and hydration until death occurs.
It is important to recognize that within the health care team, as well as within families, different people may hold different goals for feeding at the end of life. This can lead to conflict, which will be particularly difficult to resolve unless people understand each other's goals rather than assume what they are. Open dialogue is required to understand why people take particular approaches to nutrition at the end of life. Common ground for all is to ensure that the patient is comfortable and treated with dignity and respect. Acknowledge this when working through conflict.
By using our knowledge of nutrition and the natural process of dying, we can address some of the above goals:
- Hunger is usually absent as death nears, so feeding to prevent hunger is not usually indicated unless the patient desires food. Provide small amounts of favourite foods, if the patient requests it and swallowing is safe. Often just a mouthful or a sip is enough. If swallowing is not safe, thicken the food and fluid. However, a patient may decide to swallow normal food and fluids and accept the risk of aspiration.
If there is no hunger or desire for food, then forcing intake might risk making the patient nauseated or bloated. If hunger is not present, we believe that the word "starvation" does not apply, as the implied distress is absent.
- Nutrition is almost always compromised in the final phase of progressive terminal illness. However, providing calories cannot change that because the body is not able to use them for energy or to build muscle, fat and so on. Even if small amounts of high-calorie supplements are provided, they won’t make a difference. In the final phase of a terminal illness, a catabolic state develops in which the body's own muscle, carbohydrates and fat are used for energy, regardless of food intake. Providing calories at this time does not result in weight gain, improvement in strength, energy or functional status, and offers no survival benefit.
Since several of the above goals cannot be achieved through feeding, the most important approach is to "feed for comfort." Provide small amounts of favourite foods, but only if desired by the patient.
- When people feel compelled to feed a patient in order to demonstrate nurturing or their continued professional or personal commitment, it is important to help them find other ways to provide care. For example, family members may be able to help with the patient’s mouth care.
- When moral or religious beliefs affect caregivers’ approach to food and fluids at the end of life, look for an opportunity for respectful, safe dialogue. Leaders in the faith community may need to provide guidance, particularly if family members or professionals are uncertain about their religion’s teachings on end-of-life care. Health care professionals may need to transfer care to a colleague if they feel morally vulnerable.
Thus, the recommended approach to feeding at the end of life is to "feed for comfort." Provide small amounts of favourite foods, if requested by the patient, and only basic mouth care if no intake is desired. High-calorie supplements do not provide more than water or juice, and will not prolong a patient’s life because the body does not use these calories.
Acreman S. Nutrition in palliative care. Br J Community Nurs. 2009;14(10):427-431.
Palecek EJ, Teno JM, Casarett DJ, et al. Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc. 2010;58:580-584.
Your question indicates sensitivity and recognition of the important role the patient’s religion plays in her illness experience ― an essential component of spiritual care at the end of life, in and of itself. Your sense of inadequacy in addressing spiritual and religious issues is common among health care professionals, even among spiritual care specialists.
Professional caregivers can greatly help patients draw on their spiritual and religious resources. However, they may feel uncertain about how to do this when a patient’s religion is unfamiliar. A good place to begin is by gathering appropriate information about the patient’s spiritual needs.
Supporting a patient’s religious faith or spirituality begins with spiritual screening, which allows you to quickly determine the patient’s spiritual health. Look for signs of spiritual crisis or distress and the strength of the patient’s spiritual resources. Spiritual screening can be included in a patient’s routine care with a few simple questions such as:
- “Where do you find the strength to carry on?”
- “Are spirituality and/or religion important in your life?”
- “How well are these resources working for you at this time?”
The first question allows you to gauge the extent of your patient’s spirituality. The second question allows her to express the importance of religion in her life and confirm what you have already sensed. The third question gives her an opportunity to identify her spiritual needs. She may also tell you that she has questions or doubts about her religion as a result of her illness.
Once you have confirmed that religion is important to her, you might arrange for someone, such a spiritual care provider on your team, to take a spiritual history. This is especially important if your patient shows signs of spiritual distress or expresses specific religious needs she would like met while receiving care. However, if you do not have a spiritual care provider, you could expand your spiritual screening to a spiritual history by asking questions like the following:
- “What spiritual and religious beliefs are especially important to you?”
- “What gives you meaning and hope?” “How has your illness affected these beliefs?”
- “What spiritual practices or perspectives give you inner strength?”
- “Do your beliefs affect the kind of care or treatment you want?”
- “What community or group supports you spiritually?” “Are you in contact with them?”
Consider these questions as guidelines rather than as formal interview questions. They work best as conversation openers about the importance of religion to the patient and to identify her spiritual needs. The goal of such conversations is to determine what you, the team, and perhaps her faith community can do to support her.
Needs or concerns determined through a spiritual screening or spiritual history can be included in the patient’s care or treatment plan. They should be documented in the patient’s record and communicated to other team members in interdisciplinary rounds.
A spiritual screening or spiritual history may reveal spiritual distress. Signs of distress may also be observed by any team member who has regular interaction with the patient. A sense of meaninglessness, hopelessness, isolation, guilt, inability to forgive and conflicts between beliefs and experience are aspects of spiritual distress. Spiritual distress may have a strong impact on your patient’s emotional, social and physical well being and needs to be addressed. All team members should be sensitive to it and be able to recognize it.
Patients who show signs of spiritual distress should be referred to a certified spiritual care provider for an in-depth spiritual assessment. If none is available, the assessment could be performed by a team member who has sensitivity and skill in addressing spiritual and emotional issues. The spiritual assessment tool, FICA (© 1999 Christina Puchalski), provides clinicians with an efficient and useful way of taking a spiritual history. Use the spiritual assessment to determine spiritual care goals and interventions that can be integrated into the patient’s care or treatment plan.
Respect and a readiness to learn from the patient are essential for effectively responding to a patient’s spiritual and religious needs. When these are present, you can help ensure that the patient’s spirituality has a significant place in her care and be able to detect spiritual distress quickly.
1,2. Puchalski CM, Romer AL. Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med. 2000;3:129-137.
To ensure that a pain scale is serving its intended purpose, it helps to understand how it works. A pain scale is used to help assess severity of pain. Only the person experiencing pain can know exactly what it feels like, but describing it with words or numbers helps other people, particularly health care providers, at least understand something about it. This then helps them assess whether they’re providing enough pain relief.
The most common pain scale asks you to describe the severity of your pain on a scale of 0 to 10. On this scale, “0" represents "no pain" and "10" represents "the worst possible pain." You’re not comparing your pain to anyone else's; you’re comparing how you feel with the worst you could ever imagine feeling. Of course, it depends somewhat on your past experience. If you’ve had extremely bad pain before, it influences how you rate pain that’s less intense. People who’ve not had very painful experiences have a different idea of the worst possible pain.
Health care providers who specialize in pain understand this. Your care provider doesn’t expect you to feel exactly the same as someone else who gives the same pain rating. If you say you have pain that is 9 out of 10, it’s understood to mean that the pain you feel is almost as bad as anything you could ever imagine. Very occasionally, people say their pain is 11 or 12 out of 10. This is understood to mean that they’re feeling worse than they could ever have imagined. On the other end of the scale, if you describe your pain as 2 out of 10, this lets your care team know that you have pain, but it’s far from being intolerable.
When you’re trying to assign a number to the pain you’re feeling, remember first what "0" and "10" mean. Then compare your current pain to what you would rate as the worst possible pain. Remember that the purpose of doing this is to give others an idea of how you’re feeling so they can treat your pain in the best possible way. There is no right or wrong answer; this simply is a communication tool to help others understand your experience.
Using a pain scale to rate the severity of your pain is only one part of assessing pain. It’s also important to let your health care team know what your pain feels like and where you feel it. Pain can feel different and can be described as stabbing, sharp, dull, burning, tingling or pressure. Different types of pain are treated differently. For example, additional medications are used for a pain that’s described as burning. If you suddenly have a new type or new location of pain, it’s vital to tell your health care team.
It’s normal to feel anxious about visiting someone who is dying. Our society discourages talk about death, dying and illness, and few of us have much experience with it. It’s important to remember that even though your friend is dying, she’s still the same person you’ve always known. She’d likely prefer that you treat her as you always have.
First though, you may have to overcome reluctance to discuss the illness. Each of you may want to spare the other any discomfort. Yet avoiding the subject creates its own awkwardness. Do acknowledge her illness, and even ask questions about it if you want. This lets your friend know you can handle the subject, and it lets her feel at ease talking about it, if that’s what she wants. It’s good though to talk about other things besides the illness.
The best approach generally is to take your cues from your friend. Listen and watch for verbal and visual signs to what makes her comfortable or uncomfortable. It’s okay to ask your friend what’s on her mind, or what she wants to talk about. She may want to share feelings, or memories, or the interests you’ve shared throughout your friendship.
It’s okay to be emotional. This is a difficult time, and it’s likely to be easier for both of you if you acknowledge it, and even show it. Emotions may remain high throughout this time, and that’s normal. Be willing to share them with your friend. Again, try to treat her as you always have.
Often people who have a terminal illness say friends don’t call or visit. This is usually because friends don’t know what to say or do, so they avoid the whole situation. Yet, people most need their friends and friendship when they’re facing death. Be aware of how you can help your friend deal with what she’s going through.
Listening often helps the most. Offering assistance can also be helpful. If this is something you can offer, let her know it. Many people don’t want to be a burden when they’re ill, and are reluctant to ask for help. So it’s better to offer help rather than wait to be asked. In every conversation, you may want to ask in a genuine way if there’s anything you can do for her, or you may want to offer something specific.
If your friend is a colleague, you may want to let people at work know that you’re going to visit her. They may have greetings, or a card they want you to take along. Presenting these can be a good way to start your visit, especially if you’re nervous about what to say.
The first conversation with someone who has a terminal illness is often the hardest. It does get easier. You’ll become more comfortable as you continue to visit and talk.
I Don’t Know What to Say: How to Help and Support Someone Who is Dying
by Dr. Robert Buckman
Fentanyl is a medication that’s been in the media a great deal recently. It plays a large part in the current opioid overdose crisis. It’s important to remember that this crisis is mainly due to illegal opioids being used for non-medical reasons. Street drugs can contain a variety of medications with unknown strengths mixed together. This non-medical use is resulting in opioid overdoses and deaths.
Benefits when used properly and safely
When used properly, fentanyl has many benefits for patients. It’s a very potent opioid, much stronger than morphine, and is used for severe pain. It’s also used in other ways for pain treatment in the hospital or community.
When opioids are prescribed properly, used for control of pain and also watched closely for the effect, then serious problems are uncommon. Addiction and overdose are uncommon. They happen when the medicine is:
- Inappropriately prescribed.
- Not properly overseen by the health care team.
- Instructions aren’t followed properly.
Tolerance may develop if the body becomes used to an opioid medication – in which case, the dose may need to be increased to get the same pain effect. This is different than addiction. If tolerance is an ongoing problem, it may be helpful to change to a different opioid.
Sometimes when an opioid is stopped suddenly, people experience withdrawal symptoms. This is because the body becomes physically dependent on the medication.
- In order to avoid this, opioids are usually decreased slowly.
- This doesn’t mean that the person is addicted to the medication.
Addiction happens when a person has an overwhelming preoccupation with obtaining more medication – when there’s no medical need. This almost always has a negative overall effect on the person’s life, including employment, relationships and behavior.
According to the Centre for Addictions and Mental Health, a simple way to describe addiction “is the presence of the 4 Cs:
- Loss of control of amount or frequency of use
- Compulsion to use
- Use despite consequences.”
It’s very uncommon for people to develop addiction when they use opioids in palliative care as prescribed by their health care provider to manage symptoms.
Using fentanyl patches
Fentanyl is commonly used within a patch that is placed on the skin; this is called a transdermal patch. Fentanyl patches should ONLY be used to treat long-term stable pain that is well managed with current medications.
- They should be used with people who have previously taken consistent doses of opioids for at least 7 days.
- They should not be used for someone who is opioid-naïve or has intermittent or acute pain.
When a fentanyl patch is first used, your health care team will instruct you on:
- When to start the patch.
- What other pain medications to stop.
- Which short-acting pain medication to continue using “as needed” to manage breakthrough pain.
Transdermal fentanyl patches can cause serious injury.
- Safe storage and handling is essential.
- It’s important to take the medication as directed.
When picking up the prescription
Talk to your pharmacist
- The type of pain you’re experiencing.
- Any other pain medicines you’ve been taking and for how long.
While wearing or replacing a fentanyl patch
- Use the patches exactly as directed to prevent serious side effects.
- Don’t use more patches than prescribed.
- Use intact patches - never cut the patches or use damaged patches (this could result in an overdose).
Handle medication safely
- If you’re a caregiver and applying or removing a patch, wear gloves.
Choose an appropriate site
- Apply patches only on skin without cuts or sores.
- Avoid broken skin.
- Don’t shave the area before applying the patch.
To change patches
- Take off the old patch before applying a new patch.
- Place the new patch on a different area of the skin so the same place isn’t used twice in a row.
- If you’re using more than one patch, change them all at the same time.
- Document where you’ve placed each patch and the strength of each patch.
Don’t expose the patch to excessive heat
- While wearing a fentanyl patch, don’t expose the site to heat sources such as a heating pad, electric blanket, sauna, hot tub or heated waterbed.
- Also, avoid excessive sun exposure or strenuous exercise.
- The body may absorb too much medicine with excessive heat.
- Avoid overheating and watch for signs of opioid toxicity.
Monitor the patch site
- Monitor the site regularly to make sure the patch is intact and hasn’t been accidentally removed.
- If the patch starts to peel off the skin, place tape around the edges to keep it in place.
- Patches shouldn’t be applied to the waistline, or tight clothing worn over the patch, as this may cause them to be removed.
- If a rash or skin irritation develops at the site, contact your health care team.
Address any signs of an opioid overdose
- Signs of an opioid overdose include:
- Trouble breathing, shallow or very slow breathing.
- Extreme sleepiness.
- Inability to think, talk, or walk normally.
- Feeling faint, dizzy or confused.
- Depending on the severity of symptoms, access emergency health services or contact your local health care team.
Store and dispose of patches safely
- Pain patches should not be placed in the garbage!
- There’s still medication left in used patches so it’s very important to store and dispose of them safely.
- Used and unused pain patches may cause harm or death to adults, children and pets if they’re misused or used by accident.
For more information on safe disposal, see:
Odour from wounds results from bacteria that reside in necrotic wound tissue. Odour associated with malignant fungating wounds can be upsetting and may contribute to the suffering of the patient and the family. Fungating wounds also present challenging management issues for health care providers.
Based on clinical practice and a review of current literature, here are some suggestions you may find helpful:
- Cleansing of the wound using saline via pressure from a syringe through a 19-gauge needle.
- Debridement, which removes the necrotic tissue and bacteria.
- Systemic (oral or IV) treatment or topical antibiotic preparations to destroy the bacteria responsible for the malodour. Anaerobic coverage such as metronidazole is commonly used, and topical treatment appears to be more successful. For example, metronidazole IV solution, gel or powder may be applied to or sprinkled within the wound margin when a dressing is changed.
- Activated charcoal dressings may help to contain the odour. These include plain activated charcoal dressings or those combined with other dressing materials or impregnated with silver.
- Dressings made of viscose or polyester impregnated with sodium chloride (such as Mesalt) produce a hypertonic effect on the lesion and may also help in odour management.
- Optimization of the patient's personal hygiene through regular assistance with washing, skin care, and nightgown, brief and linen changes, as well as frequent laundering of soiled items.
- Optimization of the air exchange within the patient’s room or home by opening windows, or by using a fan or other ventilation system.
Commercial room deodorizers may make the odour worse or cause unpleasant associations with smell. Here are some options that have proven helpful for absorbing and/or masking odour in the patient’s room:
- kitty litter in a tray under the bed;
- bowls of activated charcoal;
- bowls of coffee beans or coffee grounds;
- cotton wool soaked in eucalyptus oil left open in a dish to evaporate (alternatives: five to six drops of vanilla oil, peppermint oil, citronella oil or lemon grass oil on a gauze swab, which is replenished three to four times a day, or a blend prepared by an aromatherapist of rosemary, grapefruit and peppermint essential oils in equal quantities and used in same way).
The presence of an odorous malignant wound can be a constant reminder of the cancer in a patient's body. It can be emotionally and spiritually distressing, and have a profound effect on the person's body image and quality of life.[5,6] It is important to allow the patient opportunities to share feelings, concerns, and fears; to provide information as needed; to discuss treatment options and involve the patient in decisions regarding his or her care; and to offer emotional support.
Other resources that you may find helpful include:
- The EPERC website, which has a fast facts sheet on malignant wounds and odour.
- The BC Cancer Agency website, which has a malignant wound care guideline.
1. O’Brien C. Malignant wounds: managing odour. Can Fam Physician. 2012;58(3):272-274.
2. Finlay IG, Bowszyc J, Ramlau C, Gwiezdzinski Z. The effect of topical 0.75% metronidazole gel on malodorous cutaneous ulcers. J Pain Symptom Manage. 1996;11(3):158-162.
3. Draper C. The management of malodour and exudate in fungating wounds. Br J Nurs. 2005;14(11):S4-12.
4. de costa Santos CM, de Mattos Pimenta CA, Nobre MRC. Systematic review of topical treatments to control the odor of malignant fungating wounds. J Pain Symptom Manage, 2010; 39(6):1065-1076.
5. Lazelle-Ali C. Psychological and physical care of malodorous fungating wounds. Br J Nurs. 2007;16(15):S16-24.
6. West D. A palliative approach to the management of malodour from malignant fungating tumours. Int J Palliat Nurs. 2007;13(3):137-142.
Racist comments can be both discouraging and hurtful for a caregiver. They shift the focus from the quality of the care you provide to who you are as a person in a way that dishonours both. One way of responding is to make a simple statement about how the comment makes you feel and then shift the attention back to the care the patient is receiving. For example, you might say something like, “I find your comment hurtful and wonder if you made it because you are unhappy with the care we are providing.”
If a patient makes a racist comment about another staff member, your response may be stronger if you start by saying something like, “I find your comment offensive. We are committed to showing respect to all our patients and we expect the same from them.” You could follow this up by asking if there is some way the team is not meeting the patient’s needs or some way in which the patient feels disrespected.
A climate of respect in health care settings begins with the staff. Health care providers who are committed to respecting cultural, ethnic, gender, racial, sexual orientation and religious diversity create a non-discriminatory environment. They model for patients and families healthy and productive ways to relate when giving and receiving care.
However, it is overly optimistic to think that you can create a caring environment in which patients or family members never make discriminatory comments that are insulting or hateful. Although racist comments are never excusable and need to be challenged, you might find it helpful to determine where the hurtful comments come from. At first glance, a patient’s remarks may seem to simply reflect intolerance and bigotry, forces that are still at work in our society. However, there is probably more going on.
Patients receiving end-of-life care are in a situation where their lives are limited by illness. They are likely experiencing not only physical discomforts, but emotional, spiritual and social struggles. So, they may be demeaning to others because they are scared of their situation and of those caring for them. Unkind comments to caregivers may be as much an expression of inner turmoil and a loss of control as evidence of a bigoted character.
Providing opportunities for the patient and the family to share how the illness is affecting them may deepen their understanding of the health care team’s role and decrease their tendency to say nasty things. A referral to a social worker or spiritual care provider may also be helpful, giving them an opportunity to discuss the impact of the illness and how it affects their relationships with caregivers.
If your individual efforts to stop a patient’s racist comments are not successful, you may need to discuss the situation with your care manager. Options for further action could include:
- a conversation between the manager and the patient about the responsibilities of both staff and patients for maintaining respectful relationships;
- mediation by the manager of conflicts between the patient and staff members; and as a last resort
- transfer of the patient’s care to another staff member.
Racist comments can erode your job satisfaction, self-confidence and compassion as a caregiver. If left unaddressed, they can taint all of your caregiving. Responding to racist remarks directly can be difficult, but addressing them head on can lead to greater understanding and respect between you and your patient.
Speaking at a memorial service is an honour. It gives you the privilege of paying respect to the person who has died, and of helping those who have gathered for the event. Speaking at your father's funeral is a special way of honouring him and the relationship you had with him. Your public mourning could be a significant healing step for you as you grieve your loss of him. It may help others who are present in their grieving too.
For most people who come to a memorial service, it is the personal stories about the person who has died that they remember later. In giving voice to the memories of your father, you help those present to remember their own experiences with him.
There isn't a specific right or wrong thing to say at a memorial service, but what comes from the heart is usually the best thing. Nobody else can truly know the way your father touched and guided your life or the kind of relationship you had. Even something that seems small may have had profound meaning for you and your family.
As this is a celebration of your father’s life, what you say should be a personal tribute to him. When you are preparing what you will say you may want to recall the memories of your father that you carry with you. Which of those memories do you want the larger community to carry away? What are the things about your father that you feel particularly thankful for? You may want to talk about what you learned from him or tell a story that highlights an attitude or value he passed on to you. Perhaps you want to talk of a special event involving him that has had a lasting influence on you. Memories of how you saw him in his relationships with you, your family, and other people can help everyone present celebrate the life he lived.
While it is appropriate for a tribute to highlight a person's qualities and traits that drew respect and affection, it also helps to keep it real and balanced. Your remembrances do not all have to be positive. As humans we all have our ups and downs, things we have struggled with, or perhaps amusing incidents that reveal our quirks or weaknesses. These are the characteristics that make each of us unique and memorable. It is okay to include some humour if this fits with your father and your family. Sometimes the touching moments we remember about people are also funny.
When you speak at your father’s service, you may be speaking not only for yourself, but for others in the family too. Ask them what they remember about your father. You can then add some of their memories, thoughts and feelings to your own comments about him.
Many who agree to speak in public about a loved one who has died find it a very emotional experience. The possibility of crying while speaking should not prevent you from taking part in your father’s memorial service as you would like. Accept that this is a tender, emotional time. Some find it helpful to say so as they begin to speak. If you become choked with emotion or start to cry while you are speaking, pause, take a deep breath, feel the support and understanding of those present, and gather yourself together to carry on. Some people find it reassuring to have a backup plan, such as having someone stand by to offer support or fill in if needed. Another option is to give a copy of what you plan to say to the leader of the service or ceremony and ask her or him to finish what you have written if you feel you cannot.
Here are some other tips that you may find helpful in preparing to speak at your father’s funeral:
- Ask the leader of the service what is an appropriate length for your speech. The length depends on whether other people will make speeches, and how much else is in the service.
- Do not try to give a complete account of your father’s life unless you are specifically asked to do so by your family or the leader of the service. Usually this information is in the obituary and most people will have seen it. Share the memories and reflections that are most important to you rather than trying to say everything you can about your father.
- Avoid sharing details that your father or other family members would be embarrassed to hear.
- You may want to comment on the comfort you have found in your religion or spirituality in the face of your father’s death, but using this occasion to promote your spiritual perspective is not appropriate.
It’s common for secretions to build up in the lungs of people who are nearing death. The dying person usually doesn’t have enough strength left to cough and clear the fluids that continue to be produced by the lungs. Gradually these secretions collect.
Generally it’s not helpful to suction secretions when someone is near the end of life. The irritation from the plastic tube tends to cause more secretions to be produced. So medications are the preferred treatment, and they’re effective to some degree in most situations. Medications, such as scopolamine or glycopyrrolate, can help dry these secretions. One way scopolamine can be easily administered is by placing a small patch on the skin, usually behind the ear.
At times there doesn’t seem to be anything that helps to decrease secretions. People at the bedside may notice that the secretions seem to drain better if the patient is lying on one particular side. Yet, by the time secretions start to collect, the patient usually isn’t alert enough to be aware of them. It may help to explain to visitors that the person who is dying and is not conscious, likely isn’t aware of or distressed by the secretions.
Moral distress is a significant ethical concern for both individuals and organizations. Some describe it as “moral compromise,” or the undermining of an individual’s integrity following participation in and/or failure to stop an event that the individual considers to be a harmful or undignified practice.
Moral distress can arise when members of a health care team disagree about what constitutes “acceptable standards of professional care.” For example, when members of a health care team are asked to provide care that is inconsistent with their understanding of acceptable professional care standards, or is contrary to their ethical framework for the situation, team members can experience moral distress or feel morally compromised.
Moral distress can also be caused by our own failings: we may decide to do or not to do something for various reasons, such as we don’t have enough time, we don't want to “rock the boat,” or we want to get along with our colleagues, even though we know our actions (or inactions) are “wrong.” The team may have reasons that influence our decision, but the decision to proceed (or not to proceed) is ours.
Awareness of the potential for moral distress is important. Health care teams can be helped in such situations by knowing what resources are available and how to access them. In particular, health care teams can benefit greatly from the input of professionals with expertise in ethics and palliative care. Thoughtful discussion and excellent communication is essential. Ideally, value conflicts may be pre-empted or addressed through ongoing dialogue with patients, their family members, and members of the health care team.
Staff may need to be rotated so they are not confronted with or spend limited time in situations where moral distress might arise. Professional regulatory bodies, such as those for nurses and medical practitioners, may be helpful in providing guidance about how to address clinical care situations in which a team member feels morally and professionally compromised. However, the onus is on facility management to take the lead in developing an approach to deal with moral distress when it arises.
To learn more, please view The Gallery video Moral distress in providing palliative care by Dr. Kevin Brazil.
There are no specific best practice guidelines on the use of oxygen at the end of life.
The first distinction that must be made is between the use of oxygen in unconscious and conscious patients. Frequently, oxygen is continued in patients who are deeply unconscious and in their final hours of life. As with all interventions, it is important to explore the hoped-for goals of treatment when communicating with the family (and, of course, with the patient when possible).
If the goal is to forestall death for as long as possible, then oxygen administration may work toward that goal; however, this is not a typical palliative goal.
If the goal is to relieve dyspnea, the unconscious patient will likely not be experiencing air hunger, especially when the patient appears calm and comfortable. There may be times when the unconscious patient appears to be experiencing increased work of breathing (tachypnea, use of accessory respiratory muscles). If there is concern about possible distress in the unconscious patient, as evidenced by facial grimacing or restlessness, consider the use of opioids rather than oxygen.
There is literature indicating that opioids may provide better relief of dyspnea than oxygen, even in awake patients who are hypoxic. In this study, opioids worked “significantly better than oxygen in reducing the intensity of dyspnoea even in hypoxic patients. There was no correlation between intensity of dyspnoea and oxygen saturation in H[hypoxic] and NH[non-hypoxic] patients. Oxygen should be seen as a pharmacological agent and not be given based on intuitive assumption of benefit."
It can be intimidating for clinicians to introduce the family to the idea of withdrawing oxygen from the unconscious patient nearing death, as it can feel like "pulling the plug." We do know that providing oxygen to severely hypoxic patients near the end of life can improve their oxygen levels, but will not likely adjust their clinical trajectory. You could say to families:
"He or she looks very comfortable. One thing that we try to do in these situations is to look at everything we're doing to make sure it's helping with comfort and isn't making the process take longer than the natural course of illness. One of the things that might actually be prolonging his or her dying, and not helping with comfort at this time, is the oxygen we are administering. I would like to suggest that over the next couple of hours we gradually reduce the oxygen, and as long as he or she remains comfortable, then we discontinue it."
If an awake or conscious patient is dyspneic and hypoxic, then there is good literature to indicate that oxygen administration helps dyspnea. There is also good evidence that adding opioids along with the oxygen helps dyspnea (perhaps even more than oxygen, as noted above). However if the dyspnea is moderate to severe, and the awake patient is nearing the end of life, then it is likely that effective opioid doses will be needed to lessen the dyspnea, but may also reduce the patient's alertness. This is something to discuss with the patient and family.
Some patients find oxygen masks feel more suffocating and claustrophobic than nasal prongs, even though the mask might be providing the needed amount of oxygen.
In the awake hypoxic patient near the end of life, encourage nasal prongs rather than a mask, so there is less of a barrier between the patient and the family. Opioids can help supplement the dyspnea-relieving effect of the oxygen, with the target being a balance of comfort and alertness that is acceptable to the patient. Don't monitor oxygen saturations to guide care, as the target is comfort rather than numbers. If oxygen is not available or is declined by the patient, then titrate the opioids to relieve dyspnea. As previously stated, for moderate to severe dyspnea at end of life, this usually means the patient will be sleeping.
What about the awake patient who is dyspneic and not hypoxic?
A recent randomized, double-blind trial was published that examined the administration of oxygen compared with "medical air" (compressed room air flowed into the nasopharynx via nasal prongs) in dyspnea. The trial showed that oxygen provided no benefit over room air administered by nasal cannula in non-hypoxic patients.
The concern with this trial is that people have taken the findings to mean that oxygen provides no benefit to patients when compared with administration of nothing, which is incorrect. The trial didn't administer "nothing" as the control arm, but rather “medical air” (as described above). We do know that cold air introduced into the nasopharynx relieves dyspnea, even if it isn’t delivered through nasal prongs. In most cases, “medical air” is unavailable, so health care teams have either oxygen or nothing (i.e., actual room air) available.
For awake non-hypoxic patients who are dyspneic, take a case-by-case approach. Sometimes a fan blowing cold air in the patient’s face will help. Sometimes adding opioids and titrating them to effect is helpful. Oxygen by nasal prongs can be very effective, and may prevent the need for opioids for a while. Consider all available options, depending on the context of the patient’s clinical status and the goals of care.
1. Clemens KE, Quednau I, Klaschik E. Use of oxygen and opioids in the palliation of dyspnoea in hypoxic and non-hypoxic palliative care patients: a prospective study. Support Care Cancer. 2009;17:367-377.
2. Abernethy AP, McDonald CF, Frith PA, et al. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Lancet. 2010;376:784-793.