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The uniqueness of palliative care in leukemia
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In the past month, I have been attending on the Leukemia and Lymphoma Service at our hospital. During our rounds, I made a comment to the residents that the leukemia service is the most aggressive palliative care service in the hospital. They looked puzzled until I explained what I meant.
The goal of palliative care as defined on the American Academy of Hospice and Palliative Medicine’s website is to:
- reduce suffering.
- improve the quality of a seriously ill person’s life
- support the person and their family during and after treatment.
Once diagnosis is made, the goal of the leukemia team is to prevent complications such as bleeding, electrolyte abnormalities and infections that can potentially lead to death.
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Initially, the complications are due to the leukemia and later they are due to the chemotherapy. Usually the period of time patients spend in the hospital is in weeks. This long duration of the hospitalization allows the medical team, the patient and family to really get to know each other well.
The medical team’s focus is not only on the patient, but also on the family. Typically, patients are readmitted to the hospital for subsequent therapies as well, and again this potentially allows for a continued relationship between the medical team and the patient and family.
Though not formally called palliative care, the therapy typically involves prevention and treatment of complications. Antibacterial, antiviral and antifungal medications are used to prevent and treat infections; transfusions are used for the treatment of bone marrow dysfunction; and treatment with pain medications and parenteral nutrition for mucositis. Historically, the improvement in outcome of therapy has been due to these supportive measures as they have allowed for increasingly toxic therapy aimed at curing the cancer.
The traditional leukemia team typically includes physicians including the attending oncologist, house staff and consultants, but also nurses, a social worker, a physical therapist, a nutritionist and a pharmacist.
The traditional model of palliative care also involves a team of medical professionals including physicians, nurses, a social worker, a physical therapist, a nutritionist, a pharmacist, and a psychologist or psychiatrist.
Despite having similar goals and similar team members there is a disconnect. In my estimation, there are at least two factors for this disconnect. One is of perception. Many nonleukemia professionals (and in my case my house staff) have the perception that leukemia doctors push patients too hard (even give chemotherapy in the ICU!), while many leukemia doctors may feel that the patient population they serve, even the elderly, can benefit from very aggressive therapy. This may be related to the differences in potential outcomes. With leukemia, the other “c” word, cure, is possible even in the poor-risk group. In the case of a typical solid tumor patient, the goal of therapy becomes palliative in nature once the cancer is metastatic.
The other disconnect is of time — by the nature of the disease, all decisions for therapy are made in a very short amount of time as compared to other solid tumor malignancies. This obviously creates a situation where a patient who until very recently had been feeling well needs to make a decision regarding therapy in a relatively short period of time or they could potentially die. In my limited experience, that is not much of a choice.
Unlike patients with solid tumor malignancy where there is gradual onset of symptoms such as dyspnea, pain and decrease in performance status, leukemia may have a very acute onset.
In a 2001 editorial in Leukemia Research, Mary Laudon Thomas, MD, called for integration of both palliative care and leukemia therapy. And if one looks at the similarities between the two, it makes perfect sense. The outcomes for patients receiving the aggressive chemotherapy are improved with better symptom control. The primary team has many concerns to deal with besides the symptoms. We know from previous research that when there is a specific person or a team focused on symptoms, the symptom control is improved. Shouldn’t then it be standard of care to have a team member focused solely on patient’s symptoms?
Biren Saraiya, MD, is an Assistant Professor at the Cancer Institute of New Jersey at UMDNJ-Robert Wood Johnson Medical School and is a member of the HemOnc Today Editorial Board.