When is the best time to get a palliative care team involved in my care?

When is the best time to get a palliative care team involved in my care?

Well, one thing we know from the palliative care literature is that unfortunately, we tend to either refer to palliative care consultants way too late in the course of illness or not at all. And part of it is because of the question that came up earlier around whether palliative care is just another term for end of life care. And it's not, and it shouldn't be. But some people still think that that's what it means. And actually, when we have studied hematologist perceptions of palliative care, many still think that it's just a euphemism for hospice care or end of life care. And so if they think that's what it means, they're not going to refer until they're stopping treatment and they think the patient is at or near the end of life.

Really what we should be doing and what the evidence base most supports now is referral at time of diagnosis of a serious illness, like an acute myeloid leukemia or some other hematologic malignancies, or advanced solid tumor. And in fact, that's actually what's in guidelines from various professional societies, including the American Society of Clinical Oncology and the Oncology Nursing Society. The problem is, we don't have enough palliative care specialists to actually see every person with advanced cancer or serious illness or even AML. So sometimes we may need to be more judicious about it, depending on the local environment.

And in that context, what I usually recommend is that the referral be based upon the needs. So if we know a patient's going to have a lot of symptom and quality of life issues, like with high dose chemotherapy, we should probably call when we're starting that treatment. If somebody is feeling okay and they're getting a low intensity treatment in the clinic, maybe they don't need to be seen right away. But once they start to develop problems and issues, if they have significant symptom burden, quality of life issues, anxiety, depression, issues, worrying about their uncertainty and prognosis, etc., that would be a good indication to trigger a palliative care referral on the basis of those needs.

So the key is to be looking out for those things that we know we could help people more with by calling a consult. And often we don't pay enough attention to those unmet needs in the clinic because it's so busy and we're so worried about the laboratory values and prescribing the medicines and dealing with the complications and the supportive care, that there's kind of not enough time and energy left. And that's actually probably part of the magic of integrated specialist palliative care, because it's an extra person and an extra team that can focus exclusively on how that person is feeling and doing, and provide an extra layer of support to make the experience better. Not having to worry about all the medical complications and issues.