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Starting the conversation about palliative care (Advanced cancer patient)

In this interview, where transcripts parts were taken by, Dr. Paul Daeninck (MD, MSc, FRCPC, Head of Pain and Symptom management CancerCare Manitoba Medical Oncologist and Palliative Care Consultant Medical oncologist and palliative care consultant), exploring the conversation between patients and physicians about palliative care. He provided a video interview to the Canadian Virtual Hospice, and was released by Creative Commons license.

Physicians, and especially oncologists, could be involved in palliative care and can use this as an additional tool in their toolbox. Providing them certain more skills and education on what to do to deal with patients who are facing end-of-life decisions, and even people who are coming in with advanced disease, that the end result will be their death. How do we start planning for that right from the beginning? How do we involve ourselves in palliative care to help things like pain nausea vomiting , the fear of death advanced care planning and all those sorts of issues that we see?

We want the doctors and nurses to look at those opportunities to start talking about things like symptom management, care decisions, what are the goals of care out of all of this.

When when we have a young person come into the Cancer Center, those goals are going to be different than an 85 year old woman or man who’s truly nearing the end of their lives and hopefully has thought about this. A person that’s 40 years of age given a diagnosis of pancreatic carcinoma, their life now is incredibly shortened… We can talk about anywhere from six months to two years that they may live, so what do you do during those two years? How do we change the focus, how do we assign what goals you’d like to get out of here: “Do I want to spend more time with the family, do I want to really work hard fight hard using chemotherapy to get as much time as possible?”. And those are the sorts of discussions we’d like the the professionals to have.

Sometimes it’s difficult for professionals because their whole training has been (focused extensively on) chemo or radiation… and by focusing in on the disease rather than the person, you’re missing “the whole forest for the trees”… And we’re trying to say “okay, step back look at this this is another person who’s there, deal with some of the issues that are important to them not not your own agenda”.

Conversations about transitioning, or the looking at palliative care as the as the next option, are very difficult, they’re very difficult for oncology professionals especially. Because a lot of our work has been used the chemotherapy to cure the cancer, sometimes some of our my colleagues feel that if the cancer is not cured… they take it as a personal failure, so they start to feel badly for the patient or the family.

I think it’s important to start with just saying “we’ve done a pretty good job here, we’ve been able to treat the cancer for a period of time, where do you think things are at…”. Many, probably about 90% of patients feel that things are changing and they want that to be acknowledged rather than some colleagues saying “things look good, we’ll see you in three months” while knowing that they’ve only got a month to live… patients then feel kind of abandoned; no one’s really come out and said what’s going on.

And I think it’s so important to be honest, so if the patient says “I really think the cancer is progressing”, yes, the cancer is progressing (acknowledge it). The patient says “I’m interested in knowing how much longer I have, what are the things that are going to happen to me”.

By starting that conversation by saying to patients “I think that the cancer is changing, we should start thinking about looking at the quality of life rather than quantity… this eventually will shorten your life you will die from this cancer”

Those are things that the patients don’t want to hear, but at the same time they want to hear… that you don’t want to leave them and say “well, things look good, we’ll see you later on” and then (when things turn out how they really are)… there’s just no roadmap, they’re they’re bitter lost in the forest… what are they supposed to do, who are they supposed to call.

And also that focus changes: before they were focusing on the chemotherapy and everyone would be excited or anticipating what would happen at the next the next appointment, what did the CT scan show, what are the blood tests showing. Then the focus changes: asking “how are things today? What happened through the day? How’s your energy, how’s your appetite, which are the things that are affecting you most” etc. How and when do we start? To sit down and make plans for the future? What does the future look like, what are the goals the patient wants out of this.

(As physicians) we are trying to get patients to live instead of just die. And I think that that’s probably the focus that too often our colleagues get into, until “I’m sorry, the cancer has got worse, there’s no chemotherapy, you’re just going to die”. So you’ve got this dying stage, when really what we should be doing is living! Living to the best of our ability! Because eventually death comes. And there’s a period of time I can predict and I can tell the patients what’s going to happen at that time, but we can have a period of time, several weeks, several months that the patient can do wonderfully, to feel like a human again and can actually do things.

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