Asked & Answered

When the bereavement debriefing session is a response to a traumatic or difficult death, it’s essential to create a safe environment in which staff can ask questions, exchange information, and share thoughts and feelings. A traumatic death debriefing session often works best when the patient care manager arranges it and attends. Using an open-ended format allows staff to share what needs to be shared, and it’s helpful to have a staff member facilitate the session.

Although all staff should be encouraged to attend, their attendance is voluntary. Those who need debriefing in a group setting will be there. But be sure to identify staff who are unable to attend and may need individual debriefing at a later date.

A traumatic death debriefing usually starts with a welcome that states the purpose of the debriefing and then encourages each person present to introduce themself and identify if they had cared for the deceased. A brief summary of the death or situation follows, and the stress and grief experienced as a result of the death are acknowledged. You can use the following questions to guide the rest of the session:

• What else would you like to know about what happened while the patient was dying or at the time of death? (Caregivers who have been involved in the patient’s care may not have been present at the time of death, or for other significant moments in the patient’s care, and may want a complete picture of what happened.)
• How has this person’s death affected you? (It’s important to clarify that there are no right or wrong reactions. Staff are human beings who are touched by the people they care for and need an opportunity to process their losses like everyone else. Encourage them to listen respectfully to each other and to avoid trying to explain away or “fix” others’ emotional responses.)
• What aspects of the care provided to this patient do you feel good about? (Encourage staff to “pat themselves on the back” and to give each other “bouquets” for the things that went well and made a difference.)
• What distresses you about the situation? What do you wish could have been different? (Staff may be distressed for many reasons. They may have had difficulty controlling the patient’s symptoms. They may have experienced conflict with the patient and/or the family, and had disagreements about the patient’s care or treatment. They may also have identified with the patient’s and family’s suffering, while feeling a lack of appreciation for the care they provided. Sometimes staff are distressed about the ethics of care or treatment. Encourage them to voice their concerns, but suggest that they seek additional discussion or consultation at another time to work through the ethical issues.)
• What can we learn from this situation and what can be done differently in the future? (The most challenging situations often offer the greatest learning opportunities.)
• What have you been experiencing since the death (physically, emotionally, socially, spiritually)? How are you taking care of yourself? What have you found most helpful in coping with this death? (By sharing different coping methods, staff can expand each other’s repertoire of coping skills.)
• What do you need from the team or other staff to help you cope with this death? (If a staff member seems overwhelmed by the death, and has few resources to cope with it, follow up to arrange appropriate supports. Often the facilitator or patient care manager is the best person to do this.)
  

The facilitator may close the debriefing session with a reaffirmation of the staff’s intent to provide the best possible care for each individual and family, and reinforce the importance of their commitment to continued learning and self-care.

Reference

Keene EA, Hutton N, Hall B, Rushton C. Bereavement debriefing sessions: an intervention to support health care professionals in managing their grief after the death of a patient. Pediatr Nurs. 2010;36(4):185–9.

First, there is room to increase the Senokot dose to eight tablets daily at bedtime. If this is not effective, it is possible to introduce polyethylene glycol and decrease the daily Senokot dosage. Sennosides (such as Senokot) and osmotic laxatives (such as polyethylene glycol or Lactulose) have a different mechanism of action. If the response to sennosides is inadequate, consider decreasing the dose by 50 percent and adding polyethylene glycol or Lactulose.

In frail, older adults, an osmotic laxative may be preferred to a higher dose of sennosides, as the former causes less cramping.

Reference

Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary, 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

While pain is a common symptom at the end of life, it isn’t caused by lack of food or fluids.

People with a terminal illness don’t have a problem with "hunger pains." Commonly they lose their appetite, their sense of hunger, and all interest in food. This can result from nausea, physical discomfort from eating even small amounts of food, and the overall effect of the illness.

As death nears, it’s very common for people to withdraw from social interaction. They may speak very little, even to loved ones, and may seem uninterested in what’s going on around them. Some family members describe this as the person just fading away.

Social withdrawal is a natural part of the dying process and is not a judgment on others. It’s often related to profound weakness and limited energy that affect the ability to remain alert and to communicate with others.

Withdrawal also may have an emotional or spiritual basis. It may be how people acknowledge that they’re going through the greatest change of their lives, that life as they know it will soon be gone. This realization appears to make many people turn their focus increasingly inward.

Many factors can contribute to poor patch adherence. Individual skin characteristics, such as skin oiliness or propensity to sweat, may interfere with adhesion. A particular brand of patch may not be suited to that individual, in which case, it may be worth trying a patch manufactured by another company.

The following is a list of considerations to optimize patch adherence:

Select the site:

• Choose a flat surface on the upper torso (back or front), arms or thighs where skin movement is limited. Avoid areas where the skin wrinkles or folds with body movement.
• Select a new site different from the previous location to avoid skin discomfort and changes in medication blood levels due to medication/reservoir build-up in the subcutaneous tissues.
• Do not apply to broken, irritated or scarred skin or areas affected by radiation treatments as this can affect adherence and absorption.
• Avoid hairy, edematous or bony/cachectic areas that will interfere with adherence and absorption.
  

Prepare the site:

• Trim hair with scissors. Avoid shaving the area prior to application of the patch.
• Cleanse the area with water and allow to dry completely.
• Avoid the use of soaps, cleansers, oils, lotions, alcohol or other agents that might interfere with adhesion, irritate the skin or alter the drug's ability to penetrate the skin. While patients should avoid alcohol-based products, individuals with oily skin have reported success with isopropyl alcohol if they gently cleanse skin first, then wash the area well with water to remove the residual alcohol, allowing it to dry completely before applying the patch.
• Avoid the use of “skin prep” products (such as those used to protect skin surfaces or increase adhesion before ostomy appliance or dressing applications). These products create a barrier on the skin that will interfere with absorption of the medication. However, in cases where patch adherence has been difficult, individuals have reported success with cleansing the area with water, allowing to it dry, then carefully applying the “skin prep” just to the area where the adhesive border of the patch will be situated, beyond the skin that will be in contact with the medicated area of the patch (i.e., only under the edge of the patch’s adhesive border).
  

Apply the patch:

• Warm the patch by holding it between the palms of your hands for a few seconds before applying, and then press the patch firmly in place with the palm of your hand for 30 seconds. Make sure that contact is complete around the entire circumference of the patch. This step is particularly important because the contact adhesive is pressure sensitive and the warmth activates the contact adhesive.
• Apply tape to increase adherence of the patch, if required in particular cases. Manufacturers recommend the use of a microporous tape applied around the edges of the patch only.
  

Avoid a covering dressing because it may apply pressure and alter drug release depending on the type used. This advice may vary according to the type and manufacturer of the patch. Please visit the manufacturer’s website and/or call their medical information line for further direction.

Bisacodyl (Dulcolax) belongs to the same therapeutic class as sennosides (a stimulant laxative that acts on the intestinal wall to promote motility and bowel movement). The onset of action for bisacodyl tablets is approximately 10―12 hrs, and the bisacodyl suppository is approximately 15 minutes. If you are using the tablets, use a similar approach as for sennosides.

Reference

Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary, 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

Polyethylene glycol (PEG) is an osmotic laxative. It acts by absorbing more moisture into the stool, increasing the fecal volume, and inducing a laxative effect. The typical onset of action for Miralax is 1―2 days for constipation and 1―3 days for fecal impaction. It is contraindicated in severe inflammatory intestinal conditions and intestinal obstruction.

Reference

Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary, 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

Canada has universal health care, which provides basic health care without user fees. Yet the provinces control health care, and some charge a fee to access the health system. Palliative care is a basic service in all provinces and territories, so there’s no charge for palliative care in a hospital. Provincial and territorial governments usually cover the medications in this situation.

If a person doesn’t need palliative care or acute care in a hospital or institution, then alternatives are considered. If a person’s condition is stable, then care may be better provided elsewhere such as in a hospice, care home, or the person's own home. Home care services provided by the government don’t have a fee. A care home or a hospice likely does charge a fee that usually depends on the facility or the individual's income.

If you’re concerned about the cost of care, some provinces and territories have special programs to cover all or some of the cost of medications for palliative care patients. These may apply to care at home, in a care home or in a hospice. Most of these government programs have criteria, which can be found on palliative care or provincial websites. Your health care team can tell you more about how the health care system works and specific resources in your region.

People who have lung cancer can be drowsy for several reasons. Most are problems that can be life-threatening if left untreated. Therefore, if a patient with lung cancer appears drowsy, it’s very important that she or he be seen by a health care provider as soon as possible.

These are the most common problems that may cause drowsiness in someone with lung cancer:

• Spread of the lung tumor to the brain
  Many cancers can spread to the brain, which may result in decreased alertness. It is common for lung tumors to spread to the brain.
   
• High calcium level in the blood
  Some cancers, such as lung cancers, cause the body to regulate calcium incorrectly, so that the level gradually increases. The symptoms of elevated calcium are usually drowsiness, confusion and constipation.
   
• Abnormal blood sugar levels
  This may have several causes. Diabetes can be a side effect of some medications used to treat cancer, particularly one called dexamethasone. A person may already have diabetes prior to being diagnosed with cancer. Some cancers cause the blood sugar to become lower. Any of these problems can cause decreased alertness.
   
• Other imbalances in the blood
  Low sodium levels can cause drowsiness.
   
• Medications
  Medications such as morphine, or those used for nausea may cause drowsiness.

It’s normal to feel lost and confused when you first get news that someone close to you has a terminal illness. You may feel all kinds of emotions and not be able to control them. The first task is to digest the news and make sense of it. It’s difficult and it takes time. Stop and reflect, think about your questions, and look for information before you do anything or make any decisions.

A good way to start is to reach out to people and services related to palliative care. It’s best to know what’s available and make contacts before there’s a crisis or a major change in your dad’s condition. Your father will have a health care team or a palliative care team to help support him and you. These health care providers can help you and the rest of your family deal with the emotions and the changes to come. If you think you’d like to talk to someone about this, don’t hesitate to ask.

It’s normal also to not know what to say. In society generally, there’s discomfort with talk about death and dying. Many people have never faced it nor had to care for someone who is dying. We have so little experience with death that most of us are afraid of saying or doing the wrong thing. Usually we say nothing and try to avoid the whole situation. Open communication helps everyone. You’ll realize that you share similar emotions and questions, and together you can ease fears, find answers to questions and reach out to health care providers for help.

It’s very important to talk with children honestly about illness and death. Children can sense when something’s wrong and may worry more if no one talks to them openly about it.

Explain to your son in simple terms what’s happening with his grandmother. Tell him that she won’t be getting better. Don’t be afraid to use the words "cancer," "death" and "dying." You can say that death means someone is no longer breathing, is not alive, can’t experience things in this world and is dead. Using the words “dead” and “died” is important. Other terms, such as "loss" or "in heaven" or "passed away" may confuse children. It’s not wise to say that eventually someone will go to sleep and not wake up. It can make children worry that this could happen to them, and they may become afraid to fall sleep.

Structure is important for young children, and helps them cope with stress. Try to maintain your son’s routine as closely as you can.

Often families don’t want children to be around someone who is dying. This leaves children with many unanswered questions and may lead to fears. It’s a good idea to take your son to visit his grandmother often if it’s possible. Continue to visit as the illness advances, as long as symptoms aren’t too distressing and your son can cope with what he sees. His grandmother may have her own thoughts about continuing your son’s visits. It may help her to talk about this while she still can make decisions. It also gives you assurance that you know what she wants.

Your son’s grandmother may have symptoms that you need to explain to your son. If she has pain, your son needs to know, so that he can act appropriately. For example, if she has pain in her back, it’s important that your son ask before climbing into her lap. If she can’t do certain things, such as walk long distances or get out of bed, it helps to explain this also.

Ask your son often how he’s feeling and if he has any questions about what’s happening. He needs to know he can talk about his feelings. Be aware that young children can have ideas that seem strange to adults. It helps to ask about these ideas and where they come from. Your son may be confused, as his thinking may be very concrete, and death is an abstract concept. This also may make it hard for your son to grasp the finality of death. Your son may need to hear the explanations repeatedly, for quite some time. When dealing with stress or new experiences some children may regress. For example, a child who has recently been toilet trained may need diapers again. Don’t be alarmed if such things happen; it may take time for these issues to be resolved.

End-stage secretions (commonly referred to as “death rattle”) is known to occur in between 12 and 92 percent of patients, with the median time from onset of death rattle until death between 11 and 28 hours. A question around secretions is whether they originate from the throat and salivary glands, or from the lower respiratory tract, possibly due to pneumonia or pulmonary congestion. Discerning the difference may be important in deciding on the treatment approach. For example, the treatment of pneumonia would likely require antibiotics rather than anti-secretory agents, and diuretics may be helpful for lower respiratory congestion.

As most patients are no longer alert at the time of the secretions, most physicians and nurses believe that they are usually not distressed by them. However, studies suggest that a moderately high degree of distress is experienced by the family. Consider discussing the issue with family members so they understand that an unresponsive patient is not aware of the secretions. Family members will often be disturbed by the sound their loved one is making. Reassure them that it is a common part of the dying process and does not cause the patient to suffer.

Nonpharmacological management methods, such as frequent turns, repositioning and minimizing parenteral fluids, seem reasonable and are not harmful. However, these methods have not been evaluated by any specific trials. Deep suctioning is certainly distressing for more alert patients, but even in patients who are no longer alert, suctioning may cause more secretions. Unless secretions are visible in the mouth, suctioning should be avoided.

Two of the most common medications used to treat secretions are both antimuscarinic anticholinergic agents: scopolamine and glycopyrrolate. Various sources quote a range of subcutaneous doses: scopolamine 0.2-0.6 mg q2-6h prn and glycopyrrolate 0.1-0.4mg q4-6h prn. There are no studies looking at the use of both medications together, nor at alternating them. Intuitively, it would seem that this would not be more effective, as they both block the same receptors. One study has suggested that scopolamine may be more effective than glycopyrrolate.

However, these drugs do have different side-effect profiles. Scopolamine crosses the blood-brain barrier, causing more sedation and delirium. Excessive doses of scopolamine will result in more agitation and delirium. Glycopyrrolate does not cross the blood-brain barrier in any significant amount. Therefore, it is thought that glycopyrrolate may be a better medication in patients who are alert and bothered by their own secretions. Further, the literature also suggests that either medication could be used as a continuous infusion if needed (scopolamine 0.6-2.4 mg/24 hours; glycopyrrolate 0.4-1.2 mg/24 hours). Common practice is to start with intermittent PRN dosing, as patients may only require a few doses. Before moving towards higher and more frequent dosing, reconsider the diagnosis (are these actually upper secretions or is the patient developing pneumonia or congestive failure?). Also consider other management options, such as discontinuing parenteral hydration and using an antibiotic or diuretic.

The above recommendations are quite standard, and generally align with common palliative resources[1, 2, 3, 4,]; however, research evidence is not conclusive. One study found no significant differences in effectiveness or survival time among atropine, hyoscine butylbromide, and scopolamine in the treatment of death rattle, but suggested that treatment was more effective when started earlier, at a lower initial rattle intensity, and that effectiveness improved over time.[5] Three studies found no differences in the effectiveness of the different medication regimens, including one regimen that used octreotide.[6,7,8] One randomized controlled trial that looked at atropine (another potential medication, but one which has little benefit over the others), found no differences in results between patients receiving atropine and those receiving placebo.[9] One comparative but uncontrolled study found that scopolamine was significantly more effective than glycopyrrolate in reducing the severity of death rattle 30 minutes after the medication was given, but this effect was no longer present one hour later, or just before death.[10] One retrospective study found that glycopyrrolate was more effective than scopolamine.[11] Two studies found that levels of hydration did not change the prevalence of death rattle.[12,13] There are limitations to all of the studies, and more high-quality studies are required for insight into both pharmacologic and nonpharmacologic interventions.

Suggested guidelines for the use of antimuscarinic drugs for death rattle were published in 2002[14], but, interestingly, a recent systematic published in the Journal of Pain and Symptom Management[15] concludes, similar to a Cochrane publication[16], that current research does not support the standard use of antimuscarinic drugs in the treatment of death rattle. Yet, it seems that for some patients, they may be useful, and they certainly continue to be used.

Communication about secretions with family members and others involved in the care of these patients is extremely important. Understanding the symptom as part of the normal dying process may help reduce family members’ distress.

References

1. Berger AM, Shuster JL, Von Roenn JH. Principles and Practice of Palliative Care and Supportive Oncology. 4th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013.

2. 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.

3. Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary. 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

4. Walsh TD, Caraceni AT, Fainsinger R, et al. Palliative Medicine: Expert Consult. Philadelphia, PA: Saunders Elsevier; 2009.

5. Wildiers H, Dhaenekint C, Demeulenaere P, et al. Atropine, Hyoscine butylbromide, or scopolamine are equally effective for the treatment of death rattle in terminal care. J Pain Symptom Manage. 2009;38(1):124-133.

6. Clark K, Currow DC, Agar M, Fazekas BS, Abernethy AP. A pilot phase II randomized, crossover, double-blinded, controlled efficacy study of octreotide versus hyoscine hydrobromide for control of noisy breathing at the end-of-life. J Pain Palliat Care Pharmacother. 2008;22(2):131-138.

7. Wildiers H, Dhaenekint C, Demeulenaere P, et al. Atropine, hyoscine butylbromide, or scopolamine are equally effective for the treatment of death rattle in terminal care. J Pain Symptom Manage. 2009;38(1):124-133.

8. Hughes A, Wilcock A, Corcoran R, Lucas V, King A. Audit of three antimuscarinic drugs for managing retained secretions. Palliat Med. 2000;14(3):221-222.

9. Heisler M, Hamilton G, Abbott A, et al. Randomized double-blind trial of sublingual atropine vs. placebo for the management of death rattle. J Pain Symptom Manage. 2013;45(1):14-22.

10. Back IN, Jenkins K, Blower A, Beckhelling J.. A study comparing hyoscine hydrobromide and glycopyrrolate in the treatment of death rattle. Palliat Med. 2001;15(4):329-336

11. Hugel H, Ellershaw J, Gambles M. Respiratory tract secretions in the dying patient: a comparison between glycopyrronium and hyoscine hydrobromide. J Palliat Med. 2006;9(2):279-284.

12. Yamaguchi T, Morita T, Shinjo T, et al. Effect of parenteral hydration therapy based on the Japanese national clinical guideline on quality of life, discomfort, and symptom intensity in patients with advanced cancer. J Pain Symptom Manage. 2012;43(6):1001-1012.

13. Morita T, Hyodo I, Yoshimi T, et al. Association between hydration volume and symptoms in terminally ill cancer patients with abdominal malignancies. Ann Oncol. 2005;16(4):640-647.

14. Bennett M, Lucas V, Brennan M, Hughes A, O'Donnell V, Wee B. Using anti-muscarinic drugs in the management of death rattle: evidence-based guidelines for palliative care. Palliative Medicine. 2002; 16(5): 369-374

15. Lokker ME, van Zuylen L, van der Rijt CC, van der Heide A. Prevalence, impact, and treatment of death rattle: a systematic review. J Pain Symptom Management. 2013. [Epub ahead of print].

16. Interventions to treat noisy breathing, or 'death rattle': the unpleasant, gurgling breathing occurring in many patients who are about to die. In: Cochrane Database of Systematic Reviews; 2012.
Available online: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0013298/

It can be very difficult to make decisions about feeding when people can’t eat on their own. Tube feeding is not considered a basic part of care. Health care providers, ethicists and the courts consider it to be artificial nutrition and a medical treatment. This makes it comparable to other medical treatments such as dialysis or assisted breathing.

The questions to consider when making decisions about tube feeding are similar to those for decisions about other medical treatments.

• What does the patient want?
• What are the goals of the tube feeding?
• What are the potential risks and benefits of tube feeding?
• How does faith or culture bear on the decision?

What does the patient want?

This is the most important question, and it may seem obvious, but it’s not always asked. If communication isn’t possible, other cues may signal that someone doesn’t want to be tube fed. Some people repeatedly pull out the tube, which signals that the patient disapproves of the tube feeding.

If a person doesn’t have the capacity to decide, then other information is considered. The most helpful piece of information is a health care directive, if one exists. A directive is prepared by the person at an earlier stage of an illness, and outlines what’s to be done in case that person is no longer able to make decisions. Even if such a document does exist, it may be too vague to offer clear direction. For example, it’s hard to know where tube feeding fits within "heroic measures" or "life support." In this case, it helps to imagine this person before the stroke. What would he or she say about this situation: being tube fed, dependent on others, usually bedridden, perhaps unable to communicate? When families think of this, most commonly they answer without hesitation, that the person “wouldn't want anything to prolong life beyond the natural course of the illness." If that’s the case, then tube feeding should not be given. It’s not right to continue a treatment that’s known to be against a person's wishes. If they can imagine the person saying “I want everything done that is medically acceptable” then the family must consider it. The family isn’t making the decision, it’s simply conveying the patient’s wishes.

What are the goals of the tube feeding?

Any medical treatment has particular goals. If the goals are not achievable, then the treatment should not be done. The health care team can offer information to clarify possible outcomes.

As an example, these scenarios show how decisions about tube feeding may be approached:

• A person may recover some independence.
  Tube feeding may be given to support the person during initial recovery, when outcomes may be unknown. There will come a time when it’s possible to assess further if a certain level of recovery can be reached. If it’s no longer possible to achieve a desired level of recovery, then the patient may reevaluate the use of tube feeding.
   
• A person is alert and in many ways doing well.
  Tube feeding is given to satisfy hunger and support the person while their regain the ability to eat.
   
• A person is in a coma or seriously ill, and improvement is not likely.
  Many families feel tube feeding should be started because feeding is such a fundamental part of caring for another human being, and it’s inconceivable not to start it or to stop it. Countering this is the legal and ethical view that tube feeding is not a fundamental part of human care, but instead is a medical treatment or intervention. This is when discussion may include setting specific goals and timelines for this medical treatment. It’s common to wonder if not providing tube feeding will cause the person to “starve to death.” Starvation, however, is related to hunger. Without hunger, someone doesn’t starve, but rather develops malnutrition. Malnutrition describes the physical aspect of lack of food. People in a coma or seriously ill don’t feel hunger; they don’t starve, but their nutrition is affected.

What are the potential risks and benefits of tube feeding?

Consider stopping tube feeding when the risks or burdens of the feeding are greater than possible benefit. Among the burdens of tube feeding is the possible discomfort that may be caused by the tubes. In addition, the feeds themselves may cause diarrhea, reflux, aspiration, and fluid overload. It’s crucial to evaluate how someone is tolerating the feeding. It’s always important to consider whether these create more of a burden than a benefit.

How does faith or culture bear on the decision?

Family members may want guidance from members of their cultural or faith community, to help weigh the implications of stopping feeding. Talking with community members can give you support and help you come to a decision.

Someone with brain cancer can expect different kinds of symptoms, all of which change as brain cancer progresses. There’s likely to be an overall decline, which affects the body as whole. There also may be an effect on a specific area of the brain or on the whole brain, which may be caused by swelling and the tumor.

Different areas of the brain control different body functions. A tumor in an area of the brain associated with a certain function will affect that function. For example, a tumor in an area that controls speech will affect someone’s ability to talk. Such effects are among the early symptoms of brain cancer and often lead to its diagnosis. As the tumor grows these symptoms become more obvious.

The effect of a tumor and swelling on the whole brain affects the general functioning of the brain. As the cancer progresses it may produce these symptoms:

• increased sleepiness;
• decreased ability to move around;
• trouble speaking or understanding conversation;
• loss of memory and especially the ability to form new memories;
• impaired judgment, especially the ability to judge how much help one needs to get around;
• weakness, which may affect only one side of the body;
• seizures;
• headaches;
• extreme mood changes.

Medications can help with some of these symptoms. Steroids are often used to decrease swelling in the brain and around the tumor. Anticonvulsants are used to manage seizures. Acetaminophen (Tylenol®) can be used to ease headaches. Occasionally stronger painkillers such as opioids are used, but the headaches usually are not difficult to control. Pain medications can be used for other types of pain, but usually pain is not a significant problem with brain cancer.

As coordination and alertness decrease, swallowing can become difficult. Difficulty with swallowing may cause secretions to enter the lungs, which may increase lung congestion. Eating may also become an issue. Often liquids are harder than solids to control and swallow. A liquid can spill prematurely into the back of the throat and cause coughing. Thickening agents, available in pharmacies, can be added to liquids to help swallowing. Speech-language specialists can help with swallowing problems as well as with any communication issues that may arise. Difficulties with swallowing, eating and drinking need individual solutions that make the patient comfortable.

When a person is having trouble swallowing, family members may worry that the person isn’t getting enough food or fluids. Yet, difficulty swallowing is only one factor that may be contributing to issues related to food and fluids. Commonly cancer patients lose their appetite and thirst. Medications such as steroids may increase appetite. If someone’s appetite is good, but the person has trouble swallowing, then ways must be found to satisfy hunger.

As brain cancer progresses, the possibility of falling is an increasing concern. People generally get weaker as any cancer progresses. With brain cancer there are added issues of balance, coordination and judgment, which may prevent a patient from asking for help. It’s challenging to prevent falling when both mobility and judgment are affected. It’s important to accept that a caregiver can only do what’s possible, and often it’s not possible to have someone at the bedside around the clock. You may want to ask for a physiotherapist or occupational therapist to assess the situation and offer advice.

Someone with brain cancer may experience symptoms that are common to most cancers generally, which affect energy, strength, appetite, breathing and responsiveness.

Background on the Opioid Crisis

The opioid overdose crisis refers to the rise in opioid overdose deaths. The crisis has resulted in prominent media coverage and has become a major Canadian health concern. Unfortunately, for many health care providers, patients and families, this has impacted perceptions regarding the usefulness of opioids in symptom management for palliative care patients.

The issues in the current opioid crisis are primarily a result of illegally obtained fentanyl or carfentanil being used for non-medical reasons. Fentanyl is a synthetic opioid that is 50 to 100 times more potent than morphine. Carfentanil is chemically similar to fentanyl; 10,000 times more potent than morphine; and is not prescribed in humans due to its extreme toxicity. Fentanyl and carfentanil are added to illicit drugs and taken by users who believe they are taking another product such as oxycodone or heroin. ^[1] Drug dealers do this to boost profit margins because they are less expensive and easier to make.

Current street drugs can contain a variety of drugs with unknown potencies mixed together, which is resulting in significant overdoses and causing an increase in opioid-related deaths. This increase was first noticed in British Columbia and Alberta, with the crisis then spreading across Canada.

In 2016, the government acknowledged that the opioid crisis is a multifaceted issue with devastating effects on many communities. Health Canada recognized the need to have a national strategy, and three documents were developed to initiate change.

1) Health Canada's Action on Opioid Misuse, which includes the following 5 actions:

• Better informing Canadians about the risks of opioids.
• Supporting better prescribing practices.
• Reducing easy access to unnecessary opioids.
• Supporting better treatment options for patients.
• Improving the evidence base. ^[2]

2) Joint Statement of Action to Address the Opioid Crisis, which represents the commitment of the health ministers and other organizations to take action on this complex health and social issue. ^[3]

3) Canadian drugs and substances strategy: A comprehensive, collaborative, compassionate and evidence-based approach to drug policy. This document calls for:

• Prevention - Preventing problematic drug and substance use.
• Treatment - Supporting innovative approaches to treatment and rehabilitation.
• Harm reduction - Supporting measures that reduce the negative consequences of drug and substance use.
• Enforcement - Addressing illicit drug production, supply and distribution.
• The above strategies to be supported by a strong evidence base. ^[4]
  
  

Addressing Concerns of Patients and Families

Patients and families may have concerns about considering fentanyl to manage symptoms at end of life based on the information they hear from the media. Note that fentanyl used properly in palliative care patients is not leading to the fentanyl overdose crisis. Opioid-related overdose or death is uncommon when opioids are:

• Prescribed appropriately.
• Used for legitimate pain or dyspnea control.
• Monitored closely for efficacy.
  

It is crucial that patients and families understand this as well as the difference between opioid tolerance, opioid dependence and opioid addiction.

Opioid tolerance – Addiction is uncommon when opioids are prescribed and used properly for pain control. The body does develop opioid tolerance as it becomes used to the medication, and the dose may need to be increased.

Opioid physical dependence – refers to the likelihood that the symptoms of withdrawal will occur should an opioid be stopped suddenly. Because of this susceptibility to physical withdrawal, opioid doses are weaned when they’re no longer being used. Patients will continue to require opioid medications to manage their pain or dyspnea unless the underlying cause of the symptom goes away. 

Addiction – occurs when there is an overwhelming preoccupation with obtaining more medication, without any medical need for it.

According to the Centre for Addictions and Mental Health, a simple way to describe addiction “is the presence of the 4 Cs:

• Craving
• 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.

See also: Pain medication myths: Addiction and hastened death

Safety Considerations with Opioids

Guidelines and Standards

Guidelines and standards have been developed to address opioid-related issues in health care. These documents are usually written to provide guidance in managing chronic pain, addiction or diversion issues and may not fully apply to palliative care pain situations. However, the suggestions for safe opioid prescribing, handling and disposal need to be recognized and adhered to by all health care providers.

Suggestions for safe opioid use in the palliative care population include the following:

• Thoroughly and frequently assess pain and other symptoms.
• Determine a clinical diagnosis and objective evidence when prescribing and re-evaluating medications with a patient.
• Consider the use of an opioid risk assessment tool when initiating opioid medications.
• Carefully evaluate concurrent medical conditions when prescribing opioids.
• Perform regular reviews of patient prescriptions and medication usage through the provincial/territorial medication database.
• Have one prescriber for a patient’s pain medications.
• Utilize one pharmacy for the dispensing of all medication prescriptions.
• When a patient is discharged from an acute care setting, prescribe only the quantity of opioids that will be required prior to community follow-up being resumed.
• In cases of long term opioid use, do not exceed a three-month supply and consider specific instructions on refill information within this time frame.
• Consider random pill counts and/or random urine drug testing for patients on opioids.
• When patient assessment or reassessment reveals a diagnosis of a substance use disorder, strongly consider consultation with addiction medicine specialists.
• When patient assessment or reassessment reveals a history of a mental health diagnosis, consider consultation with a psychiatrist or other mental health services.
• Consider consultation with a palliative care specialist/team if pain management is complex, or when suggestions for managing pain are desired.
• Educate patients and families on the safe storage of medications. Advise that prescription medications, especially opioids, should be securely stored and preferably locked. This will decrease the potential for other household members (especially children) deliberately or accidentally taking these medications.
• Ensure medications that are not being used are returned to the pharmacy. This would include: when a patient is prescribed a new medication or dose, and upon the death of a patient.

In Conclusion

Diversion, misuse and abuse are potential patient safety issues that can be reduced when health care providers are vigilant with implementing safe opioid prescribing, initiation, titration and monitoring. As health care providers taking care of palliative care patients, we need to educate patients and families about the safe use, handling and storage of opioids, which includes ensuring there is a plan for safe removal of opioids from a home following the patient’s death.

References

1. Canadian Public Health Association (CPHA). Fentanyl’s path of death and destruction: June 1, 2017.

2. Health Canada. Health Canada's Action on Opioid Misuse. 2016.

3. Health Canada. Joint Statement of Action to Address the Opioid Crisis. 2016.

4. Health Canada. Canadian drugs and substances strategy: A comprehensive, collaborative, compassionate and evidence-based approach to drug policy.  2016.

Other References

College of Physicians and Surgeons of British Columbia. Professional Standards and Guidelines: Safe Prescribing of Drugs with Potential for Misuse/Diversion. (Revised October 28, 2016).

Fraser Health Hospice Palliative Care Program.  Symptom guidelines: opioid management. 2016. 

Harlos, M. Palliative Care Incident Pain and Incident Dyspnea Protocol. 2001.

National Pain Center. The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain.  2017.

No matter what your patient has done in her life, she can create a legacy. She can gain a place in the hearts and memories of people if she weaves love, gratitude and forgiveness into the last chapter of her life story. This is the simple, yet profound, wisdom that comes from Dr. Ira Byock’s identification of the four statements that matter most in life: “I love you.” “Thank you.” “Forgive me.” “I forgive you.”[1]
So, encourage your patient to reflect on and respond to questions like the following:

• “Who are the people who matter most to you?” “How can you let them know what they mean to you and how you feel about them?”
  
• “Who are the people who have helped you become the person that you are?” “How would you like to thank them?”
  
• “What unresolved hurts or conflicts are you carrying?” “Are you ready to let them go and to forgive those involved?” “How could you do this?”
  
• “Are you aware of people who feel you have hurt or wronged them?” “Are you ready to ask for forgiveness so that you can restore your relationship?”
  

You might also suggest that she identify the people who mean the most to her and to select a personal memento (preferably from possessions that have been important to her) that symbolizes what she appreciates about the person. The memento could be as simple as a photograph or as significant as a treasured piece of artwork or jewellery. If possible, she could arrange times to meet with the recipients to present her gifts and to tell them what they have meant to her and what her wishes are for them. Preparing a note to go with each gift could help her make sure that she expresses what is important to her about the relationship. Such a gift may well become a lasting treasure and precious memory for each person. If she does not have the strength or energy to prepare these gifts and notes, perhaps a friend, family member or hospice volunteer could assist.

Finding opportunities to review and share her life story might also be helpful in establishing her legacy. (See Sharing My Story for ideas on how she might do this). Having another person listen to her story will highlight its significant moments and relationships, and affirm the meaning of her life. By sharing her story, she may realize that in the living of her life she has already created a legacy.

Dignity therapy is a more formal approach that guides patients through a reflective process. During one-to-two-hour sessions, patients are encouraged to focus on aspects of their lives that have mattered most, and to consider what they wish to say to those they are leaving behind.[2] The sessions are audio-recorded, transcribed and edited. The result is a written legacy that can be given to loved ones in accordance with a patient’s wishes. Studies evaluating patient satisfaction with dignity therapy report a 91 percent satisfaction rate, with 76 percent of patients reporting a heightened sense of dignity after participating. [3] Dignity therapy asks patients to respond to questions like the following:

• “What parts of your life do you remember most or think are the most important?” “When did you feel most alive?”
  
• “Are there specific things you would want your family or friends to know about you?” “Are there specific things you want them to remember?”
  
• “What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc.)?” “Why were they so important to you, and what do you think you accomplished in those roles?”
  
• “Are there particular things that you feel still need to be said to your loved ones, or things you would want to take the time to say once again?”
  

Whether palliative professionals use dignity therapy in a formal, structured way or not, questions like the above can guide a health care team in helping patients to do legacy work. Dignity therapy has proven to be an effective way of helping dying patients preserve their self-respect and leave a legacy.

References

1. Byock I. The Four Things That Matter Most: A Book About Living. New York, NY: Free Press; 2004.

2. Chochinov HM. Dignity Therapy: Final Words for Final Days. New York, NY: Oxford; 2012.

3. Chochinov H, Hack T, Hassard T, Kristjanson L, McClement S, Harlos M. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005; 23(24):5520-5525.

Your mother may be struggling with defining who she has become within her increasing physical restrictions. It is very difficult to be an observer of the suffering that comes with such a struggle.

An important first step is to ask your mother and her health care team if she has any symptoms that affect her comfort. Uncontrolled symptoms such as pain or shortness of breath can be so overwhelming that they become the main focus of the person’s life, and may cause someone to say they want to die. They can change a person’s emotional and spiritual state, and affect overall quality of life. Addressing physical symptoms will not make everything suddenly better. However, it may allow your mother to focus on her emotional and spiritual struggles.

As your mother's ability to care for herself declines, she may struggle to define herself in a new way. When her health suddenly worsens or she hears that her illness is advancing, she likely will experience a range of emotions. She may say she feels numb, sad, helpless, disappointed or angry, to name just a few possible emotions. You and other family members may have similar feelings. All of these reactions are normal. There really are no specific words that will alleviate the distress of the situation, but you can bring your mother much comfort just by being physically present.

With all the changes your mother has experienced she may be distressed or overwhelmed by her situation. This may make you feel helpless. It is one of the toughest parts of witnessing someone who is struggling with thoughts of life and death. It is important to understand that there is really nothing you can do to fix the situation. If your mother cries, this is a time to show your love and support. Hug her, hold her, and let her know you are there for her. Crying and feelings of sadness are very normal response to serious illness. If her feelings become severe she may be depressed. Ask her health care team to watch for signs and symptoms of depression, so they can manage any that occur. Let her team know if you notice any changes, such as trouble eating or sleeping, or loss of interest in daily activities or the things that used to bring her pleasure. Articles in this section describe common symptoms, including depression, that may arise as illness progresses:
Symptoms

The most important thing you can do is to be attentive to your mother and let her know you are there to support her. Often the most helpful thing you can do is to listen to her express her thoughts and feelings; listening is an excellent way to show you are attentive to her needs and available to her. It may also help you to determine if she needs help from the health care team in solving some of the issues she faces.

It is also helpful to say out loud that you are there to support her. Sometimes people don't say this clearly because they believe their support and intentions are obvious or understood. However, it is important to put your feelings into words. You could say something like this: "I love and care about you, and do not like to see you going through this difficult time. Please know that you are not alone. I am here for you whenever you need me." Such words are reassuring, and leave the conversation open to discussing emotional and spiritual struggles. If you feel uncomfortable starting a discussion, you may want to consider some of the tips in this article:
What Do I Say?

Your mother may find it hard to have such discussions with family. Ask if she is interested in talking with someone else. If she belongs to a faith community she may want to talk to her spiritual leader. Alternatively, her care facility may have a spiritual care provider or social worker on staff, or may be able to call on such people from the community.

In general, as your mother struggles with the changes in this phase of her life, you can be her advocate. Discuss your concerns with her health care team, and ask for their help in addressing these concerns.

Most palliative care programs require people to accept that the programs offer a comfort-focused approach to care rather than efforts to cure the underlying illness. This is hard for many people to accept. Even if deep down they are aware of their situation, it’s hard to let go of hope for a cure.

This can be frustrating and upsetting for others, but people with life-threatening illnesses need the time and space to find their own approach. They also need support in whatever form they will accept. As the burden of illness becomes heavier, the reality of the situation becomes harder to deny. This usually brings a gradual shift toward accepting support.

It may help to ask your husband why he’s refusing palliative care. His refusal may be based on misconceptions. Many people, even some healthcare providers, believe palliative care equals no care. Unfortunately, this often is how palliative care is raised. Your husband may believe that nothing will be done for him. This is not true. Palliative care is very active care, with a clear focus on comfort, including symptom management, and quality of life.

Even if your husband never lets go of the hope for a cure, or may never even acknowledge his illness, palliative care can offer the best possible quality of life. In such circumstances, people working in palliative care are presented as healthcare providers who can help manage his symptoms, such as pain or nausea.

Your husband’s healthcare providers need to spend time discussing your husband’s concerns, what he can expect, and realistic options for treatment and management of symptoms. It’s hard to tell someone that there are no options left that could change the progression of an illness. Yet, this is far from saying "there’s nothing more we can do". Palliative care offers much that can and will be done, although with different goals. Your husband may need reassurance that no one is giving up on him.

If health care providers are not part of a team where grief support services are provided, they can still engage in personal processes, such as journaling or connecting with others. The latter may involve debriefing with a trusted colleague or meeting privately with a counsellor on their own time. Many employment assistance programs across the country include this service as a work benefit.

It is important for health care providers to pay attention to their own needs for self-care and to do what works for them. They need to find their own ways to replenish while caring for others. Taking care of themselves physically by ensuring they get regular exercise, adequate sleep and good nutrition is essential. Health care providers also need to take care of their minds and spirits in a way that “works” for them, by planning a holiday, treating themselves to a massage, and participating in activities they finding fulfilling, such as walking, yoga, listening to music, reading, or participating in a faith community.

References

Sinclair S. Impact of death and dying on the personal lives and practices of palliative and hospice care professionals. CMAJ. 2011;183(2):180-7.

Kearney, MK, Weininger RB, Vachon ML, Harrison RL, Mount BM. Self-care of physicians caring for patients at the end of life: “being connected... a key to my survival.” JAMA. 2009;301(11):1155-64.

Discontinuing life support is one of the most difficult and complex decisions a family can make. It may help to go through these steps in making your decision:

1. Learn as much as you can about the medical situation and the likelihood of improvement.
2. If your loved one prepared a health care directive, then use this to guide care decisions. If the directive names someone to act as a proxy, then the proxy decides on care.
3. Imagine what your loved one would say about the situation if he or she were able.
4. Ask health care providers or a hospital ethics committee for guidance.
5. Have the health care team monitor the situation and assess, or reassess the situation.

1. The first step is to get as much information as possible from the health care team about the possibility of recovery. If recovery is possible, it’s important to understand to what degree it’s possible and what level of functioning the patient will have. Lung functioning is important, but brain functioning is usually the main consideration. If the brain is not expected to recover to the point of allowing awareness of self and surroundings, then the quality of the person’s life must be seriously examined. Quality of life is a major factor in making a decision about life support.

2. Once you have a good sense of what can be expected medically, you may find guidance in a health care directive. Ideally the patient will have prepared such a document, and it addresses this scenario and what to do. Alternatively, it names a person to act as a proxy in order to make decisions on the patient’s behalf. Unfortunately, most people have not prepared such a document, or if they have, it’s too vague to offer clear direction.

3. If there is no health care directive, or if the directive isn’t clear on this situation, then ask yourself what the patient would want. Families struggling with decision-making may find that role-playing is a way to come to a decision that feels right. First, imagine the patient is alert. Then, imagine explaining all the available options. Now, ask yourself, “What would he or she likely say?” When family members think of this, very often they’re clear what their loved one would say. It might be “I don’t want anything to prolong this condition" or, “Take me off the machine." It might be “I want all possible treatments that make sense medically.” It might be something else. If you’re confident that you know what your loved one would say, then you have the most helpful possible piece of information to guide decisions. In this case, you’re not making the decision, rather, you’re conveying the patient’s wishes.

4. If you’re not sure what the person would say, you can ask for guidance from health care providers. Some hospitals have an ethics committee that can help with these difficult issues. The ethics committee meets with the health care team and the family to discuss the situation. It then provides guidance on what decisions are ethically acceptable.

5. There may come a time when the health care team no longer considers it good health care to continue life support. Their treatment efforts may be intense, yet they see no improvement in the patient’s condition, and don’t expect improvement. If the situation reaches this point, it’s time for a reassessment and serious discussion with the health care team, the patient if possible, and family.