Palliative Care

Published on 10/06/2015 by admin

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chapter 23 Palliative Care

The Broad Scope of Palliative Care

Ideally, palliative care should be integrated throughout the entire course of any child’s significant illness. Unfortunately, in both public and professional perceptions, palliative care is often erroneously equated with end-of-life care. However, care at the end-of-life is only one component of palliative care, which also includes ongoing relief of symptoms, such as pain, breathlessness, disturbed sleep, providing psychosocial and spiritual support, and facilitating shared decision-making about treatment goals.

As so well delineated in A Guide to the Development of Children’s Palliative Care Services, four broad groups of children are described for whom palliative care is applicable, highlighted by several examples:

This chapter is designed to help you develop the following clinical skills:

Broaching the topic

Case Histories

Case History 1

History. Kate, age 11 years, has been treated previously for infantile acute myelocytic leukemia. She now has a secondary cancer that is unresponsive to a variety of chemotherapeutic regimens. She is having pain, and her appetite is nonexistent. Kate knows her prognosis is poor, but no one has really talked with her about how she feels. You could initiate that discussion as, “Kate, I’ve had a chance to read your chart and speak with the other folks who are helping look after you. Now, it would really help me to hear from you. Can you tell me how you think things are going?

The emotional impact of pain, uncertainty, and a deteriorating condition can be difficult for children and families to acknowledge and understand, for themselves and in conversation. Thoughtful questions can help children experience their feelings in a safe environment, while other means of assisting children in exploring their emotions include play, drawing, or acting.

Useful questions might include:

Continue to pace the conversation and the amount of information shared according to how the patient is pacing you. This conversation and exchange is much like a two-step dance; you do not want to outpace the patient, step on toes, or cause the patient unnecessary injury. Conversations can and should extend over multiple visits. This is possible if important topics are introduced early enough.

Provide effective pain and symptom management

Suppose Kate reported her pain intensity as 7 out of 10. Applying the universal principles of the World Health Organization’s (WHO) analgesic ladder, codeine (Step 2) is inadequate for Kate’s pain severity. If pain is inadequately relieved with 1 mg/kg per dose, increasing the codeine dose will only result in increased side effects, with inadequate pain relief. This ceiling effect, typical of the Step 2 opioids, further fuels the argument to avoid codeine entirely. A proportion of patients lack the necessary enzyme to convert codeine to the active metabolite and, consequently, receive inadequate relief. Morphine, hydromorphone, or another opioid for moderate-to-severe pain, corresponding with Step 3 of the WHO Analgesic Ladder, is now indicated for Kate.

It is very important to be on a high alert for side effects. Children may forgo analgesia if they feel that the side effects of a medication are more troublesome than the analgesic effects, especially if the side effects are prolonged. Although generally well tolerated, opioids may cause nausea, vomiting, itchiness, urinary retention, sedation, or agitation, which may attenuate several days after starting opioid therapy. A more serious but uncommon side effect is respiratory depression. Constipation is an anticipated side effect, which does not resolve the longer that someone is on opioid therapy. It must be proactively treated by starting a bowel regimen with the initiation of opioid therapy. At the least, these symptoms should be asked about and addressed as they occur. Because the medical conditions that these children have are often complex, with their own constellation of symptoms and polypharmacy for managing their illnesses, it can be difficult on occasion to know whether a symptom, such as nausea, is being caused or contributed to by the opioid. A knowledge of the opioid’s peak, onset of action, duration of effect, and biologic half-life can be helpful. Appropriate titration of dosage or changing between the various opioid options is effective in mitigating adverse effects.

Kate’s codeine was stopped, and morphine, along with a bowel regimen, was started.

Address concerns of addiction and safety

Clinician (speaking with Kate’s mother, Sandi): It seems that our treatments are much more effective now in treating Kate’s pain. I’m really glad. Do you have any questions about where things stand now?

Parent: I’m very glad that her pain is under control, but to be honest, I’m worried about what’s going to happen when its effectiveness wears off. My friend’s son was addicted to drugs, and we watched him spending more and more to keep his habit going. I’m afraid the same thing will happen to Kate—after all, isn’t morphine almost the same as heroin?

Clinician: I can understand your worry. We hear a lot about inappropriate use of certain medications, like opioids, but it’s different for Kate. She’s using them to control her pain. Her needs and experience will be very different from someone using them for an effect other than pain relief. Taking any medication, including opioids like morphine, does not somehow change a child into a different person. We know from studies of hundreds of children and youth who needed such medications for pain control, that the incidence of addiction was no greater than that of the general population.

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FIGURE 23–2 The World Health Organization Analgesic Ladder.

(Modified from the World Health Organization: Cancer Pain Relief and Palliative Care in Children. Geneva, Switzerland, World Health Organization, 1998.)

Parent: OK, fair enough, but won’t she continue to need higher doses?

Clinician: I understand that you may be worried about that. What you are describing is called tolerance and that is very different from addiction. Tolerance is not usually the reason that these pain medications need to be increased. Higher doses are more often related to increasing pain as the illness changes. With medications like morphine or hydromorphone, we can continue to adjust the dose to Kate’s comfort. There is really no maximum compared with the codeine she had been taking.

Parent: But I’ve heard that one of the side effects of morphine is to slow down breathing. If Kate needs higher doses, I’m scared the medicine could actually kill her if she gets too much!

Clinician: You are certainly not alone in thinking about this, as many share your concern. I think some more information would help you feel less worried. For example, if Kate were just recovering from major surgery, she would be receiving pain medication, like morphine, at a certain starting dose according to her weight. If Kate has significant pain over a longer period of time, with gradual adjustments, she would be able to tolerate doses that may reach many hundred times higher than the dose we would have started with, and her higher tolerance would mean less risk of respiratory depression. We know this from clinical experience and, more recently, from good research.

Children rely completely on their caregivers for access to medications and pain relief. Should you or the parent have concerns about addiction, side effects, or other frequently unvoiced concerns, the child could be denied access to appropriate therapy. Just as initiating a bowel regimen (of stool softener and cathartic) is an integral part of starting opioid therapy, a discussion with the child’s family, caregivers, and child (as appropriate) is necessary to proactively address concerns. It is helpful to start such a discussion in the third person, such as, “Many people worry that [insert a common concern/misperception].” Wait for a response, then follow-up with, “Have you heard about this?”

Some parents may also be against the use of opioids because they associate such analgesia with advanced illness and dying. A caring focus on the child’s present suffering and need for adequate pain control can be helpful in addressing this. Acknowledging their role as caring parents, who wish the best for their child, and that ensuring the child’s comfort is congruent with being caring parents, can be helpful. It is particularly effective when parents who have been anxious and reluctant about opioid use can see that their child, who appears to be feeling better, is displaying more of his or her usual behaviors, being playful and interactive when relieved of pain.

The importance of courage and honesty when having difficult conversations

Many topics related to progressive illness can be uncomfortable to raise, but parents of children who died of cancer tell us that one of the most important attributes of the health professionals who cared for their child was honesty. Brothers and sisters of children who died from brain tumors said knowing what was expected, including information about their sibling’s death, was very important for them.

Both research and clinical experience demonstrate that honesty is integral to the patient-physician relationship. Many clinicians worry that speaking honestly may erode the patient’s and family’s hope. But hope and honesty are not mutually exclusive.

Case History 2

History. Riley was 4½ months old, awaiting a neurological consultation for hypotonia, when he developed a severe respiratory compromise from pneumonia. He was diagnosed with spinal muscular atrophy, a progressive, life-limiting neurodegenerative illness. Riley’s family speaks volumes for the early integration of palliative care, “We wanted to let you know how much we appreciated the help you gave us concerning our angel Riley.

“We are so thankful for all the time you spent with us when Riley was diagnosed. Those hours you spent with us engaging us in productive, honest conversation were very positive for us. It helped us frame our hopes and wishes for Riley; how far we’d go with his care and his end-of-life care. Without our conversations, I’m afraid we would have avoided thinking about those hard things until we were in a critical, emotional time. I’m sure those decisions would have been much harder and not always thought through at those times.

“We are also thankful for your visits on subsequent trips to the hospital and for your assistance and willingness to discuss Riley’s care with his care team here (local community). As well, all the literature you offered us, the girls, and our parents. My parents were thrilled with the grandparents book you sent. Thank you for all of that.” Diane, Shawn, Brie, Matti, and angel kisses from Riley (who died at age 15 months)

Quote shared with the permission of Riley’s family and our thanks.

To share difficult information without causing advertent, iatrogenic harm, you need to hone your skills in exercising attentiveness, respect, compassion, and to develop a sense of the most appropriate timing for initiating such difficult conversations. Ideally, the patient, the family, and their information sharing preferences should be known to you. However, there are times in clinical practice when this ideal is an inaccessible luxury, and you then must proceed with consideration and caution. The single greatest cause of litigation against physicians relates to their poor communication with the patient and/or family.

Sharing bad news

Some families have expressed distress with how difficult news and information were shared even years after their child’s death. Others tell us that, despite having difficult discussions, when the doctor’s compassion was evident, their distress was attenuated.

When reviewing the status of the illness and goals of care:

Follow with a positive and feasible action and recognize the parents as care partners: “Let’s work on how we can make sure that Kate is comfortable, that Kate gets to do some of the things she has wanted to do outside of the hospital, and that we put things in place so that Kate can be cared for closer to home” (if that is congruent with the parents’ wishes).

Recalling Kate and our wish and the parents’ need to support hope and honesty, imagine that a child waking from a nightmare has a great need to tell someone, “A big tiger tried to eat my toes!” The moment that the child does tell someone about it, he or she feels better. Children and youth facing advanced illness also experience relief when they are able to talk about their greatest fears alongside their greatest hopes. You can open such discussions with a non-threatening invitation—“Some people who have been very sick with the same type of illness that you have [your child has] have worried that…”—and leave time and space for their response. Follow this up with, “I wonder if you have any ideas or worries if your (Kate’s) illness were to get worse?” Framing this discussion with if invites a discussion that feels far safer than when.

“If we can hear about your concerns and wishes now, then it is much more likely we’ll be able to take care of Kate in the way she and you would wish. This way, you won’t be in the middle of a very difficult time, having to think through tough decisions. Other children and families tell me they actually felt relieved to have had this talk, even though they found it hard at first. They felt able to put it aside, having had their worries addressed. In case things don’t go as well as we are all hoping, we know we have a plan in place and can make Kate as comfortable as possible.”