Introducing Palliative Care

Published on 09/04/2015 by admin

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20 Introducing Palliative Care

Joetta Deswarte Wallace, Linda Muro-Garcia

Hope is the thing with feathers that perches on the soul and sings the tune, without the words, and never stops at all.

—Emily Dickinson

The introduction of palliative care into the plan of care for a pediatric patient can be challenging. It is important to understand that palliative care is not synonymous with end-of-life care. The World Health Organization (WHO) defines palliative care as:

• The active total care of the child’s body, mind and spirit, and also involves giving support to the family,
• Beginning when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease,
• Requiring healthcare providers to evaluate and alleviate a child’s physical, psychological, and social distress,
• Incorporating a broad interdisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited,
• Being provided in tertiary care facilities, in community health and hospice centers, and in children’s homes.

End-of-life care refers to the care delivered when death is almost certain and close in time. Care at end of life can be incorporated into palliative care as the approaches to cure become less of a focus and symptom control becomes the goal. At this stage, the primary team may change its approach, leaving the life-limiting diagnosis aside, and focus on symptom control, quality time with loved ones and assurances of dignity and respect for the child and family.

Care at end of life can be synonymous with hospice care, but in the United States hospice is a Medicare benefit and is defined as a special way of caring for people who are terminally ill. As in palliative care and end-of-life care, hospice care involves a team-oriented approach that addresses the medical, physical, social, emotional, and spiritual needs of the patient and support to the patient’s family or caregiver. Hospice care, however, is usually given by a public agency or private company approved by Medicare and is different from the original primary care team. The goal of hospice is to care for a terminally ill patient and family, not to treat the illness (http://www.medicare.gov/publications/pubs/pdf/hosplg.pdf). Several basic differences between palliative care and hospice are listed in Table 20-1.

TABLE 20-1 Hospice vs. Palliative Care

Hospice Palliative care
No further curative approaches Concurrent with therapies against underlying disease
<6 months’ life expectancy Incorporated at diagnosis and not time limited
MediCare benefit with daily reimbursement (approximately $125/day) Charges reimbursed as a component of care for the underlying disease
Hospice team becomes the sole provider of services Primary care provider directs care and services

Incorporating palliative care at diagnosis can be challenging, even though approaches to control symptoms of discomfort and care for the psychosocial needs of the family are usually incorporated into excellent pediatric care specialties. Tertiary care centers, complete with specialists in most conditions, provide state-of-the-art treatment aimed at the cure of most life-threatening conditions. The hope for success is expected by the healthcare professionals as well as the families, and usually accomplished. Technological brinkmanship is described as pursuing aggressive treatment as far as it can go in the hope it can be stopped at just the right moment it turns out to be futile. As medical care accelerates in its technical and scientific sophistication, the fine line between prolonging life and prolonging suffering may become blurred.1 Acknowledging that not all children will be cured and that approaches to cure can cause discomfort or even harm can be difficult. Physicians may find it difficult to acknowledge to a child or family that cure is not likely and may feel that they have failed professionally when curative options have been depleted. Families may suspect that they are not receiving all possible information about treatment options from their healthcare team, or that potentially curative therapies are being withheld because the center where they are receiving care is not as capable as another center, or for financial reasons. The family and the healthcare team may struggle with the feeling of giving up on the child and not continuing to fight for the child’s life. When palliative and curative approaches are offered in tandem throughout the illness, there is less of a sense of transitioning to a different plan of care.2

The realization that a child will not be cured may be clear at the time of diagnosis or it may become apparent only later in the course of treatment. Reports from the Institute of Medicine (IOM)2 and the American Academy of Pediatrics (AAP)3 include recommendations that discussions of palliative care begin at diagnosis for some conditions. This allows for curative therapies to include measures to assure comfort and enhance quality of life throughout the disease process. The AAP policy includes statements that indicate inclusion of palliative care early in diagnosis could be of tremendous benefit to the children who eventually lose their lives to their diseases as well as to those who recover. Because the term palliative is frequently perceived as meaning a step away from curative approaches, it can be difficult to introduce the concept early in the plan of care.4 Identified obstacles include an uncertain prognosis, parents not being ready, and time and staff limitations.

When dealing with a diagnosis for which the outcome is uncertain, healthcare providers may be reluctant to introduce the perceived opposites of curative vs. comfort-focused approaches. This dichotomous model can be challenging for families and healthcare providers.5 A diagnosis with an uncertain outcome can instead be the signal to offer palliative care, even if end-of-life care discussions are not yet appropriate. Pediatric oncologists surveyed by American Society of Clinical Oncology report a key factor in their decisions to shift from curative to palliative care is the absence of effective therapy.6 This reluctance can subject the child to multiple treatment regimens in desperate attempts to find the elusive cure and can result in increased toxicities and potentially hampered quality of life. Healthcare professionals may find it challenging to confront the truth of a poor prognosis without removing hope and the decision to involve palliative care may be feared to constitute an abandonment of hope for a cure, regardless how remote. Allowing the family to hear possible outcomes of a diagnosis may offer them the opportunity to better collaborate with healthcare professionals and prepare for what may lie ahead for them.

The idea that a parent will ever be ready to hear that their child will probably not survive is inconceivable. Parents may intellectually understand that the prognosis is very poor but remain reluctant to accept the likelihood of their child’s death while waiting for a cure. Denial can be an important coping mechanism, but it can also function as a barrier to providing comfort and quality-of-life choices to a child during intensive treatments and at end of life. Denial can be damaging to relationships within the family and can result in moral distress for healthcare providers as further curative attempts become perceived as prolonging suffering.7 Research findings indicate that parents want to know as soon as the healthcare team knows that their child may not survive and what assurances they have that their child’s comfort needs and quality-of-life issues will be addressed. It has also been shown that families are more satisfied with their relationships with the healthcare providers when they are better informed of possible outcomes, even if discomforting.8 In a study looking at parents’ priorities for quality end-of-life care in an intensive care setting, honesty and access to complete information were the key recommendations from families.9 Rather than parents’ perceived readiness, the healthcare professional’s comfort with discussing the topic that can be expected to be difficult and time consuming may be a more important issue.

The time and expertise required to discuss issues of symptom control and quality of life can easily exceed a healthcare team’s resources. At the same time, social workers, chaplains, nurses, and physicians may believe that comfort and supportive care are included in their existing plan of care without the need to add a palliative care specialist specifically. However, a retrospective study looking at healthcare record documentation did not reflect the use of these services for supportive care for children at end of life.10 The need for more education and mentorship in palliative care to improve staff members’ knowledge and experience in this area is well recognized. Reimbursement for specific palliative care services remains limited, but can usually be included as routine services charged along with treatment support.

Introducing Palliative Care

The introduction of palliative care can be done using three different approaches.

An added dimension to care

Many disciplines are involved in the treatment of a child with challenging conditions. These may include medical subspecialists, surgeons, nurses, social workers, pharmacists, dieticians, child life specialists, and many others. As with any of these disciplines, palliative care can be introduced as a component of the care team whose focus will be to provide comfort from disturbing physical, social, or spiritual challenges. Palliative care specialists participate in developing a plan of care that is collaboratively established along with the patient’s and family’s goals of care. A palliative care model has been proposed for children with cancer in which components of quality of life care are integrated into family care along the illness trajectory. This model demonstrated how palliative care was essential regardless of the child’s prognosis, because even children with an essentially good prognosis could eventually require end-of-life care.11 Including palliative care at the time of diagnosis allows palliative care to become the foundation upon which additional treatment modalities are built. If all involved can assure that comfort and quality of life are key components of care, then additional interventions such as surgery and medical treatments can be evaluated by their contribution to or deterrence from that base. This modality allows for palliative care to be incorporated at the earliest time and can be accomplished by adding skills and experiences to the basic healthcare team or can include the incorporation of new members specializing in palliative care to the primary team.

By allowing the palliative care team to join at diagnosis, the family does not feel that strangers are being added when the family needs support and consistency from those who have cared for them along the course of the illness. An example of this approach to timing could be the extreme premature infant. A child born at 25 weeks’ gestation is considered viable, but will remain in the neonatal intensive care unit for several months and will likely require extended community support for developmental delays, supplemental oxygen requirements, and specialized feeding requirements for years. Although the child may ultimately survive, the child’s and family’s needs for information support and coordination of complex care needs can be facilitated with the early involvement of palliative care professionals. In this case, a palliative care consult may be included in the order set for premature infants less than 28 weeks’ gestation. The primary physician or the palliative care professional can introduce the concept by saying, “In our NICU, we include professionals who will help us address your and your baby’s physical, social, and spiritual needs. Working with our doctors, nurses, and social workers will be a palliative care team. You will be introduced to that team sometime this first week, and they may remain involved with your child’s care even after discharge.”

Movement from cure to palliation

When conditions have a high likelihood of cure, it is not uncommon for healthcare practitioners to exclude the topic of palliative care until it becomes obvious that a cure will not be accomplished. At this time, specialists are usually added to the primary team to introduce a change in treatment approach from curative to palliative. This approach allows for continued therapy toward the possible cure, but the goal of comfort and quality time with loved ones becomes a priority. With the primary team still managing care, new treatment and outcome goals may be established collaboratively with the patient and family, using concepts of palliative care. An example of this approach to palliative care can be seen with a child diagnosed with a relapsed medulloblastoma. While the concepts of palliative care may have been incorporated into the primary team’s approach to the condition at original diagnosis, treatment of this recurrence is unlikely to result in a cure. While additional chemotherapy, radiation therapy, and alternative approaches may be considered, the palliative care perspective would assure that approaches to treat the underlying cancer did not deter unacceptably from the child’s comfort, quality time with those who love him or her and assurance of dignity and respect. The toll upon the child and family can be weighed against the potential prolongation of life.

Palliative care could be introduced at this time by the primary physician saying, “As we consider treatment options for your child, I am asking another specialty to join us. The palliative care service will work with us to assure that while we continue to consider perhaps aggressive treatment options, we are equally aggressive in addressing any signs of discomfort or worries that could arise. These professionals are part of the excellent care we want to continue to provide to you and your child.”

Transition to hospice

The hospice approach is employed when all attempts toward a cure are abandoned and all efforts are placed on comfort and quality time with loved ones. At this time, specialists in hospice may enter the care team, and as a result of restrictions imposed by third-party payers, the primary team may become less involved. Care is provided by the hospice service, which will include physicians, nurses, social workers, chaplains, and child life specialists who are not necessarily the same people as those on the primary treatment team. This transition can be very difficult for families who have come to rely upon the collaborative care provided by their primary team. Families have been known to express feelings of abandonment and desertion at this time. Healthcare professionals may be concerned about their lack of involvement at a very vulnerable time with families with whom they may have had several years of involvement. It would be ideal if the primary team could continue to be involved and coordinate this aspect of care, which would include bereavement support.12

An example of this approach could be the child with a severe cardiac defect which is not surgically correctable. The child would be given medications to alleviate fluid retention, control pain and dyspnea, and oxygen supplementation, but could be followed by a hospice team that visits him or her in the home and provides support at end of life and through bereavement. Again, the primary physician is best to introduce this transition in care. A typical introduction could be, “We have exhausted all approaches that could be expected to cure your child. It is now time to change our care plan away from her underlying heart problem and instead challenge anything that is making her uncomfortable, or that decreases the quality time she has with you or others who love her or that in any way impact her dignity. I would like to ask our hospice team to meet with you to offer their services.” It is important to remember that hospice service could be provided by existing, and possibly already involved, palliative care professionals, without a change in service providers or loss of primary care provider.

The timing and wording used for introducing the concept of palliative care can be as varied as the conditions that warrant it. If not incorporated at the time of diagnosis, establishment of clear guidelines for when it should be introduced need to be established in areas where concerns for the child’s and family’s comfort and relief from distressing symptoms would be helpful. Early inclusion, prior to discussions about preparations for death, are particularly helpful to foster the inclusion of the patient and family in the multidisciplinary care plan. Examples of language that may be used by clinicians when discussing palliative care and end-of-life issues are included in Table 20-2.

TABLE 20-2 Examples of End-of-Life and Palliative Care Language

End-of-life language
Helpful phrases Avoid
May I just sit here with you? It was a blessing…
Is there anyone I can call for you? You have other children and your family to think about.
I can’t imagine how difficult this must be. I know how you feel.
Would you like me to talk with your other family members, or be there with you when you talk with them? You must be strong for your family and other children.
Palliative care language
Helpful phrases Avoid
Let’s talk about the lab tests and treatments that are not providing benefit for your child and talk about discontinuing these. It’s time to pull back in her treatment and not order expensive tests.
Let’s review what we have done so far in care, what has been the outcome, and what our goals of care are now. There is nothing more we can do.
In my experience, I have not seen a child in this situation survive. We will continue to hope for his comfort and quality time with those who love him. A miracle may turn things around.

Clinical Vignette

Sarah Kohn, 6, was recently diagnosed with recurrent acute myelogenous leukemia after previously being treated with chemotherapy and hematopoietic stem cell transplant from a sibling donor. Her parents are meeting with the pediatric oncologist, social worker, and primary nurse. The palliative care nurse practitioner has been asked to join the multidisciplinary conference, and will be meeting the family for the first time.

MD: Mr. and Mrs. Kohn, we have the results of Sarah’s bone marrow aspiration biopsy. As you probably suspected by us asking to meet with you as a team, our concerns have been confirmed and her AML has returned.

Mother: I just knew it! She hasn’t been herself for the last two weeks and her counts were dropping.

Father: Now what do we do? More chemo? Another transplant?

MD: We have some options that we would like to discuss with you, but I must be honest with you. Our chances to cure Sarah are very remote. We have other chemotherapy regimens to try, but her leukemia has proven to be stronger than our best therapy. Other therapies are less likely to be more effective at eradicating her cancer.

Mother: So what happens if you can’t get rid of the cancer? Is she going to die? Please don’t tell us that!

SW: I know this is very difficult for you. Let’s hear what therapies the doctor has to offer, then make a plan to do the very best we can do for Sarah.

MD: I have asked the nurse practitioner in charge of supportive and palliative care to join us. I believe that her services can add much to what we are going to offer.

PCNP: I’m so sorry that you have received such devastating news. My role on her treatment team is to assure that regardless of the treatment options that we decide upon for her cancer, we will always strive to make sure that she is comfortable, that she has the best quality time with those who love her, and that we treat her with respect and dignity for the fabulous person that she is. We promise to do the same for you. I suggest that we use these three goals as our base upon which any treatment options are built. I will explain further as we discuss her treatment options.

MD: There are basically three different approaches open to us at this time. The first is to give Sarah another very strong chemotherapy regimen; even stronger than her previous therapy. This will probably result in her being in the hospital for four to six weeks, possibly in the PICU, and with a serious risk of multiple infections and toxicities; any of which could take her life, even if we are successful in getting her back into another remission. If she does go into remission, we could consider another bone marrow transplant (BMT), but the toxicities would be greater yet.

The second choice would be to give Sarah an experimental therapy that has not been proved to be effective against AML in children, but has shown some promise in the laboratory and with adult studies. The purpose of giving her this therapy would primarily be to learn more about that specific drug and how a child who has been heavily pre-treated would tolerate it. The toxicities to this therapy would be expected to be less than the first option, and Sarah could benefit from the therapy.

The third option is for us to use just enough chemotherapy to minimize her symptoms, while allowing her to be at home with the fewest side effects. Again, none of these three options have the potential to cure her disease. We don’t have a therapy that can offer that to Sarah at this time. I have already checked with colleagues specializing in AML therapies nationwide and no one has any other options that they would recommend.

SW: Please understand that you are not making the decision of which therapy to give her by yourself. We will be making this decision together as a team. No parent should be expected to make the decision alone, and the medical team can’t make the decision without taking into consideration what is important to you and Sarah.

PCNP: As we think about these options, why don’t we talk about what is really important to Sarah. Because I don’t know her yet, what can you tell me about her? What is she like when she isn’t in the hospital?

Mother (sobbing): She is the most energetic, happy, positive little girl that I have ever known. She always has a smile for everyone. She loves to play with her dog, and her friends and her little sister.

RN: Sarah is loved by all the nurses for exactly those attributes, even though she never likes to be in the hospital! She is always showing us pictures of her dog, and places and people she likes to visit. She is an avid artist and we have lots of her creations posted in the nurse’s station.

Father: I don’t want to give her any therapy that will take Sarah away from us again. I thought I would die when she was hospitalized for so long for her transplant. And she was so sick. I don’t want to do that again, but I also don’t want to give up! You can’t ask us to do that!

MD: No one is suggesting that we give up. We have treatment options, and we will continue to hope for the best outcome for Sarah. If we can get her into another remission, we may be able to give her some more time, possibly even another BMT.

SW: Would you be interested in talking about an aggressive approach, including another BMT?

Mother: I’m not sure I could handle that again, and I don’t think Sarah is strong enough for it. I would want to offer her the best chance she has for a cure so that she can live and grow up.

PCNP: Again, regardless of the treatment option that we all decide upon, we all agree that we will build upon our promise to assure her comfort and quality time with you. Some of these options may make that goal easier than others.

Father: If we choose to give her the experimental chemotherapy, there might be a chance for a cure, and it doesn’t sound as hard as the stronger chemo and BMT. Is that right?

MD: It would be possible, but not expected, for the experimental chemo regimen to place her into a remission and again, it is not expected to cure her. Our hope would be that we learn more about this medication, a child’s tolerance of it, and any effect that it may have on her disease.

SW: Hope is a very important part of any choice that we make at this time. We will all work together to foster that hope that Sarah can live along with her cancer, comfortably, for as long as possible.

PCNP: Would you like to talk about some of the symptoms that bothered Sarah the most during her previous therapies? This could help us anticipate and prevent their occurrence in whichever subsequent therapy we decide upon.

The meeting continued with discussions about pain, mouth sores, septic shock episodes, nausea and vomiting, anorexia, fear, and loneliness. The PCNP, SW, MD, and RN all provided suggestions that may prevent or minimize each symptom in the future, while the parents offered specifics as to what had worked in the past. Upon completion of this conference, the parents asked for a day to discuss it with their family and rabbi. They returned to further discuss their options, and eventually, along with the healthcare team, chose the experimental regimen. A plan of care was developed with palliative care and symptom control as the base and additional approaches to assure comfort and as much quality time with loved ones outside the hospital as possible. All hoped for and worked toward minimizing Sarah’s hospital stays, and eventually she experienced a peaceful, dignified death at home, surrounded by loved ones, including her dog.

Summary

When a child is diagnosed with a life-threatening or life-limiting condition, the lives of their entire family is changed forever. Their physical and affective world is immediately changed, regardless of the outcome of treatment. A multidisciplinary healthcare team is required to offer hope to children and families regardless of the possibility of a cure. This approach focuses not only on cure, but also incorporates the understanding that quality of life must be assured regardless of length of life and that compassionate care can be provided in all stages of treatment. Palliative care adds much to the plan of care for children and their families regardless of the underlying prognosis.13 It allows the patient and family to partner with the healthcare team to assure that along the disease trajectory, comfort and quality of life remain the base upon which therapeutic interventions are offered and assures a partnership among the patient, family, and healthcare team.

References

1 Callahan D. The troubled dream of life: in search of a peaceful death. Washington, DC: Georgetown University Press, 2000.

2 Field M., Behrman R. When children die: improving palliative and end-of-life care for children and their families. Washington, DC: National Academies Press, 2003.

3 American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics. 2000;106(2):351-357.

4 Davies B., Sehring S.A., Partridge J.C., Cooper B.A., Hughes A., Philp J.C., Amidi-Nouri A., Kramer R.F. Pediatrics. 2008;121(2):282-288.

5 Selwyn P.A., Forsetin M. Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: “Let me live the way I want to live, until I can’t.”. JAMA. 2003;290(6):806-814.

6 Hilden J.M., Emanuel E.J.K., Fairclough D.L., Link M.P., Foley K.M., Clarridge B.C., et al. Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology Survey. J Clin Oncol. 2001;19:205-212.

7 Davies B., Clark D., Connaughty S. Caring for dying children: nurses’ experiences. Pediatr Nurs. 1996;22(6):500-507.

8 Wolfe J., Grier H.E., Klar N., Levin S.B., Ellenbogen J.M., Salem-Schatz S., et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000;342(5):326-333.

9 Meyer E.C., Ritholz M.D., Burns J.P., Truog R.D. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117(3):649-657.

10 Carter B.S., Howenstien M., Gilmer M.J., Throop P., France D., Whitlock J.A. Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care. Pediatrics. 2004;114(3):361-366.

11 Harris M.B. Palliative care in children with cancer: which child and when?. J Natl Cancer Inst Monogr. 32;2004: 144-149.

12 Docherty S.L., Miles M.S., Brandon D. Searching for ‘the dying point’: providers’ experiences with palliative care in pediatric acute care. Pediatr Nurs. 2007;33(4):335-341.

13 Hutton N., Jones B., Hilden J.M. From cure to palliation: managing the transition. Child Adolesc Psychiatr Clin North Am. 2006;15(3):575-584.

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