This post may contain affiliate links, which means I’ll receive a commission if you purchase through my links, at no extra cost to you. Please read full disclosure for more information.
Having the hospice talk with your patient may be one of the most difficult conversations you will have in your career. Unfortunately, many nursing schools do not prepare nurses to talk about end-of life and hospice care.
All too often, training on how and why to have the talk are limited during the nursing school. As a result, most nurses are not comfortable talking about hospice because they have not been properly trained. Sadly, this can lead to hesitancy when discussing topics such as advanced directives and hospice.
Consequently, I have seen first hand how this hesitancy can lead to negative effects for the patient and the family.
Over the years, the one thing that is abundantly clear to me is that we are failing in this area. Disclaimer: I do not blame anyone for being hesitant to approach this topic.
Honestly, I will be the first to admit that it is uncomfortable to talk about dying. Let alone talk about it with a stranger.
One thing that I’ve learned though is that empathy and honesty can go a long way.
First off, as healthcare providers, we are not all knowing and we certainly don’t have a crystal ball. So then why are we having this discussion.
Simply put, we must.
According to research, the longer a physician knows the patient, the more inaccurate they are in estimating the patient’s prognosis.
Prognostication at End-of- Life
Predicting life expectancy is difficult. In fact, a study published in the British Medical Journal found that out of 468 patients, physicians only predicted survival at a rate of 20%. To be more direct, physicians were overly optimistic 63% of the time and overly pessimistic 17% of the time.
Furthermore, the longer the duration of their relationship with the patient the more their accuracy decreased.
This is not to speak negatively of physicians but to further emphasize the importance of talking to patients sooner rather than later. For instance, when a patient has surgery, we do not hesitate to let them know about their options. In fact, we will most certainly sign them up for home health, physical therapy, or other services if they need them.
In contrast, when a patient has exhausted all curative treatment options, we are hesitant to mention their options for hospice or even palliative care.
During my time in Oncology, I can vividly recall physicians offering clinical trials that offered very little if any benefit to the patient under the guise of offering them hope. I used to think to myself, at some point we will run out of rabbits in our hats and this patient won’t be ready.
6 Telltale Signs of Decline
So, how do you know when it’s time for the hospice talk?
First, try to remember that it’s not just up to the physician to talk to the patient about their wishes. (However, after 20+ years of nursing I understand that some physicians might frown upon you doing so without their consent.) Do what you have to do…
It’s no wonder that it continues to be taboo.
Secondly, you will need to be able to recognize the the telltale signs of decline.
6 Common Signs of Decline
- Frequent hospitalizations or emergency room visits
- Falls with increasing frequency
- Increase assistance needed for ADLs
- Unexplained weight loss (more than 10% of body weight in past 6 months)
- Ineffective pain and symptom control requiring numerous medication changes
- Continued decline despite ongoing treatment
Top 3 Reasons to Have the Hospice Talk
1. Prevents unwanted procedures
2. Decreases feelings of abandonment
3. Reduce conflicts and stress at end-of-life
How To Get Prepared:
- Allow enough time and make sure you have privacy.
- Share information directly and simply.
- Ask the patient questions.
- Listen to the patient’s responses and watch for their emotions.
- Demonstrate empathy and respond appropriately to their questions and concerns.
- Don’t be afraid to say you don’t have the answers if you don’t. (But, make sure to get them.)
- Don’t offer false hope. Hope is not so great when it is false!
- Address common hospice myths and provide clarification.
Please, I urge you to understand that as a nurse you have an obligation to inform your patients. No, I am not saying that you should go against the physician. First off, I would never say that. But I would urge you to be an advocate for your patient and their family.
An example that I like to use for my cancer patients, is “I hope this regimen works, if it doesn’t, think about what you want to happen next. What do you want?”
They don’t need to have the answers right away, but this gives them time to think about their options and start talking with their family and loved ones. Frankly speaking, most patients are aware of their situation and appreciate honest discussions.
Personally, I’m a big believer in patients having input in their care.
How To Start the Conversation
You can start by asking questions.
- When you think about the future, what concerns you the most?
- What’s most important to you?
- How are you hoping that we can help?
- What do you understand about your condition?
- What have you been told about your diagnosis?
- If you could not eat or drink, would you want artificial nutrition and hydration i.e. tube feeding?
Related Resources regarding the Hospice Talk
Several years ago, Dr. Steven Pantilat, presented at the University where I work. And his presentation forever changed the way that I talk to my patients regarding death and hospice. Dr. Pantilat is a palliative care physician and founding Director of the UCSF Palliative Care Program. Honestly, he is absolutely fearless in his approach to hospice and palliative. You should check out his videos if you have time.
Also, another great book that discusses the transition to end-of-life and difficult discussions is Being Mortal by Antul Gawande. It is so thoughtful and full of examples of why this topic is so important. If you are too busy to read the book then you SHOULD DEFINITELY take a sneak peak at the PBS video Being Mortal on YouTube.
Conclusion
Finally, let’s wrap it up. We can all agree that having the hospice talk is tough, right? Remember, you are not expected to have a crystal ball. Furthermore, prognostication is difficult so make sure that you understand the signs of decline.
Once you do this, then you can have a meaningful conversation with your patient and their family. Also, use the tips and questions above to open the door to difficult conversations. Your patient’s will thank you. If you are interested in learning more about these conversations and other helpful resources, sign up for e-mail updates using the form below.