Do you understand the difference between palliative care and hospice? If not, let me give the quick schpeel, then I’ll talk more about how to have these super hard discussions regarding a patient diagnosis, prognosis, etc.
Palliative care is the aggressive symptom management for anyone with a chronic or severe illness. With that being said, all hospice care is palliative care, but not all palliative care is hospice. This means that you can STILL be receiving palliative care (aggressive symptom management) even while aggressively treating your chronic or terminal illness. An example of this would be a cancer patient who is wanting to continue to pursue chemo/radiation treatments, but needs more assistance with symptoms – in walks palliative care! However, if they choose hospice, they then forgo any continue chemo/radiation as they have chosen the season of life where curative treatment is no longer the goal, but rather symptom management and quality of life. It is also extremely important to note that in both palliative and hospice care, the patient will be treated not only for his or her physical symptoms, but also spiritual, social, and psychological symptoms. (Check out Dame Cicely Saunders concept of “total pain”…it’s genius)
Because of this, the conversations in palliative care can be much more difficult than those with hospice care due to the fact that often times once a patient has chosen to see hospice, they understand (for the most part) that they are extremely ill and pursuing care at the end of their life. However, having the conversations in palliative care, before they understand the severity of their disease or illness, is a whole new level of difficult, sad, awkward, and awful.
Some rules of thumb, before we get into the real nitty-gritty details are this:
1. Terminology is key! Not everyone understands lingo like “stage 4”, “terminal” or “malignant” so always try to talk about things on more of a human level and less of a medical level. NEVER speak in a way with medical lingo that can be viewed as speaking down to them.
2. Speak to them as you would want someone to speak to your mother, brother, father, or child. Again, remove some of the medical sterility in the conversation. You’re about to share with them possibly earth-shattering news.
3. Always start by finding out what they know. You might be surprised to find out that they actually have a very minimal understanding of their illness. Often times, it’s either because no one knew had to tell them (or didn’t want to yet to avoid the patient “giving up hope”) or told them is medical terms and therefore the patient didn’t have a good understanding and was too embarrassed or shocked to ask questions for clarification.
4. Then, ask what they want to know. Separate your views from the patients for a second – not everyone wants to know exactly where they are headed. On the flip side, some people want to know every single detail that you can share.
Now that you have a basis of understanding how to begin the conversation, let’s dive deeper with the help of the
SPIKES protocol, as laid out by Baile et al. (2000):
1. Step 1: “S” – setting up the interview
a. Arrange for privacy, only including those whom the patient wants involved.
b. Make sure it a comfortable setting with seating.
2. Step 2: “P” – Assessing the patient’s Perception
a. Just as discussed previously, ask them what they know so you know what gaps you’ll need to fill in for the discussion.
3. Step 3: “I” – Obtaining the patient Invitation
a. What do they want to know? Do they want to know everything now, or just partial information with a follow up meeting?
4. Step 4: “K” – Giving Knowledge
a. In case the patient doesn’t understand that the conversation is leading to bad news, you can start by saying “ Unfortunately, …” or “I’m sorry to tell you…”.
b. **Never say – “There is nothing more we can do for you.”** Because there is always more you can do that would be more in line with the patient’s therapeutic goals, such as good pain control and symptom relief.
5. Step 5: “E” – Addressing the patient’s Emotions
a. Offer empathy.
6. Step 6: “S” – Strategy and Summary
a. Ask for any final questions.
b. Often, it’s good to ask them if they want to think about things and discuss it among themselves, then ask if they’d like a follow up meeting to go over more the plan and how they’d like to pursue treatment. Also, this will give them more time to come up with other questions, as they are often is a state of shock for quite a while.
So, of course, this is all easier said that done. However, just remember to speak to them as a human and how you would want someone to talk to you or your family to deliver this news. Then always offer support and availability to answer questions.
Jaymie Wilson, APRN-CNP, ACHPN
Baile, W., Buckman, R., Lenzi, R., Glober, G., Beale, E., & Kudelka, A. (2000). SPIKES – A six-step protocol for delivering bad news: application to the patient with cancer. The Oncologist, 5(4), 302-311.