What are the goals of palliative care?
Palliative care clinicians treat physical symptoms (pain- and non-pain-related) and also aim to alleviate psychological, social, and spiritual suffering experienced by patients facing a serious and life-altering illness. Palliative care is available at any stage of serious illness, from the time of initial diagnosis and throughout disease-modifying treatment, including care with curative intent. We work as an interdisciplinary team comprised of physicians, nurse practitioners, nurses, social workers, chaplains, physician assistants, and pharmacists. We focus upon the values, wishes and goals of patients and their family members, and enhancing quality of life as they define it. We emphasize collaboration and communication with the patient’s primary treatment team and support their ongoing delivery of care.
Our goals are to assess a patient’s total pain experience. We look at pain from a multidimensional perspective: “How is this affecting a patient physically, psychologically, socially, and spiritually? How is the pain interfering with the patient’s daily functioning? How is it impacting his or her quality of life?” By taking a complete history across those different domains, we can often reduce the pain to a more tolerable level that is acceptable and meaningful to the patient.
Another primary goal is to assess a patient’s understanding of his/her illness, treatment options, and likely disease trajectory. We can help identify questions and concerns the patient may have about his or her condition, treatment, and/or prognosis, and then facilitate communication with the treating hematologist. Between us, we can then determine how best to address these important questions.
I like to think of the collaborative, collegial relationship as fluid, intertwined, and flexible, where primary palliative care is provided by the hematologist as part of the care plan upfront, and specialty-level palliative care support is readily available when needed. For example:
- when a patient receives treatment with highly emetogenic chemotherapy, the hematologist provides symptom-based palliative care by ordering anti-nausea medications
- for a highly anxious patient, the hematologist may pre-medicate before performing the bone marrow aspirate and biopsy
- for a patient experiencing sickle-cell-related pain, the hematologist provides pain management
However, there are also circumstances where specialty-level palliative care can further advance the care already being given by the hematologist – both with symptom management and psychosocial support. This specialty-level palliative care involvement may be episodic and intermittent, or instead may be ongoing, longitudinal, and co-managerial.
When should the hematologist contact the palliative care specialist?
It is helpful to first meet before collaborating on any specific patients, for collegial introductions, and to better understand one another’s patient population and scope of practice. As a palliative care physician, I like to know, “What are some challenging symptom management issues that you face in your practice? Are there symptom management or trajectory-of-illness communication issues where you ‘get stuck?’ Are there consistent areas where a collaborative approach would be helpful to you?” This helps me better understand the hematologist’s needs, and also gives him/her the opportunity to ask me about my approach within palliative care. Our work in palliative care can touch upon sensitive topics, and it is important for referring colleagues to feel comfortable and know what to expect from a palliative care specialist.
These conversations can help us find opportunities where we might work together, either for specific patients, or in developing a routine clinical pathway for the palliative care team’s involvement when specific clinical issues arise.
I think there are a few scenarios when the palliative care specialist may be especially helpful in collaborating on a hematologic patient:
- if the patient’s pain symptoms seem particularly multi-factorial or complicated
- if you feel like you are needing to manage the pain in a way that is outside of your comfort zone
- if the patient and/or family members are struggling with decision-making relating to treatment options
- if there are multiple, simultaneous distressing physical symptoms
In some instances, an interventional pain management approach, or the resources of a dedicated chronic pain clinic, might be most appropriate, and that patient would benefit from a referral to the pain management specialist. If there is a broader total pain phenomenon (having psychosocial, spiritual, and quality-of-life elements strongly impacting the physical pain experience), the palliative care specialist’s perspective may best complement the hematologist’s ongoing care.
What are unique issues of palliative care for patients with hematologic disorders?
Obviously, the need for transfusions in this patient population can be profound, but what was once a lifeline for patients for so long can become ineffective and burdensome. This can raise difficult issues for patients where collaboration between our providers can be rich and effective.
For example, in a patient requiring transfusions for a hematologic condition, we can review the patient’s overall trajectory to predict his or her likely outcome. That includes asking each other:
- Are transfusions being required more often?
- Is the efficacy of the transfusions lessening? Is the patient responding as robustly to the transfusions?
- What is the patient’s functionality or performance status? Are transfusions helping the patient’s energy level now as they previously did?
- How does the patient’s overall status compare to month ago? Three months ago? Six and twelve months ago?
- Would we be surprised if the patient would be alive in six months? In one year? Why or why not?
Together we can look at global indices of a patient’s well-being. As hematologists know, with many hematologic disorders – unlike solid tumor oncology – you can’t always measure the size of a tumor or the impingement upon an organ and come to conclusions about the trajectory of the illness. You have to rely on longitudinal information. A dual approach can take the aggregate care and interpretation of the illness to the next level – examining where the patient’s been, where the patient is now, and where we would forecast the patient to be in the future.
What kinds of questions should hematologists be asking their patients to assess pain?
Pain can be thought of as “the fifth vital sign.” For anyone providing pain management, it is important to assess how all the different domains – physical, psychosocial, quality-of-life, spiritual – are being impacted. For example, a patient’s physical pain may prevent him or her from attending church, which may then contribute to feelings of spiritual pain from losing that connection with his or her congregation and God. So, that physical pain is having broader implications on the patient’s life. In this case, one component of the “total pain” management plan, then, is reducing that physical pain, but also thinking about alternative ways the patient can access his or her faith. This would involve asking questions like, “Can your pastor come to your home? Is there a television program that would equate to going to Mass?”
Similarly, there are critical questions that can provide us with more insight beyond a numerical rating of pain: “How would your life be different without the pain? What do you think is causing the pain? To what degree can your pain be relieved? What does that pain mean to you?” These questions can help us better understand both the individual patient’s pain experience.
Relative to the hematologist’s practice and clinic workflow, pain assessments may be initiated as part of an intake questionnaire conducted by a medical assistant or a nurse colleague at the beginning the patient’s visit – asking about the intensity, severity, duration, location, and what makes the pain better or worse. Gathering those data can help guide the hematologist, when necessary, toward conducting a more thorough pain assessment during a clinical visit.
When does a patient transition from cancer treatment plus palliative care to only palliative care? What makes determining that point difficult?
It is different for every patient. One important way I find helpful is to explore and identify the patient’s values and goals. We need that individualized, personalized context for examining potential treatment options at each stage of illness. It can help guide us in terms of transitioning from a dual approach of active cancer-directed therapy and palliative care, to a focus more exclusively upon palliative care itself.
Patients place great trust in their hematology and oncology providers. As a result, some patients may be reluctant to disclose the full extent of their symptom burden, or their hopes and fears to their treating hematologist/oncologist because it may alter their treatment course or prompt discussion of “bad news.” However, in a different venue with a palliative care provider, patients may share information differently than they do with their treating hematologist/oncologist – because they feel that it is a more “low-stakes” environment. We can pool the information shared to then most fully address a patient’s needs and concerns. Also, the palliative care clinician’s appointment blocks may afford more time to explore the patient’s concerns in ways that the busy clinician may not be able to do as routinely.
The fundamental nature of a hematologic malignancy makes this “transitional identification” difficult. Cancer has elements of inherent uncertainty, and unforeseen disease-related developments can arise abruptly and without warning. We try to explore and counsel about the elements of uncertainty in palliative care, as this is often quite distressing to patients.
What are some common misconceptions about palliative care that you have encountered?
One of the biggest misconceptions is that we only care for patients at the very end of life when there are no further disease-modifying therapeutic options. Without question, patients at the end-of-life are an important patient population we work with, but specialty-level palliative care is available upstream, earlier on in the disease trajectory – including at the time of diagnosis of a serious and potentially life-limiting illness. We are trying to reduce suffering, reduce symptom burden, and improve quality of life – regardless of the stage of illness.