Tips for Having the Tough Talk
If you have a loved one who’s facing a difficult or life-limiting illness, it can be easy to focus only on moving from one moment to the next. But it’s important in these situations to also consider the future and what your loved one’s wishes will be when the battle reaches its end.
Though it will be difficult, this is best accomplished by talking with your loved one about their end-of-life wishes well in advance of the end. Here are a few tips you can use to make this conversation a success:
Choose a Time When Everyone Can be Involved
These end-of-life decisions will have impacts that reach far beyond the patient. So, with that in mind, it’s important to include as many people as possible in the conversation. Who these people are exactly will differ for every patient. They might be children, siblings, close friends, or clergy. But they should be people who will be actively involved or directly impacted by whatever decision your loved one reaches.
When you’re planning the conversation, make a list of who you think these people are and then consult with them on a time and place that works for everyone. It’s possible you might overlook someone important, so it would be wise to share your list with someone you trust. To successfully complete this difficult journey, you’ll need the help of a strong team. So you need to start assembling yours right away.
Don’t Wait to Talk
This conversation will likely be difficult and emotional, so it’s understandable why some family members might try to put it off for as long as possible. But that would be a mistake. There’s plenty of evidence showing that patients who take early action can dramatically improve their end of life (EOL) experience. For example, a recent study in the Journal of Clinical Oncology found that “[h]ospice care is associated with better symptom relief, patient-goal attainment, and quality of EOL care. Encouraging earlier and increased hospice enrollment may improve EOL experiences for patients with cancer and their families.”
If you put the talk off for too long, you also increase the risk that your loved one will be too ill to make their own wishes known at the point when important decisions can no longer be delayed. In these moments, too many families are left to guess at what their loved one’s wishes would be. And without the definitive word from the patient, there’s no way to determine the answer with any certainty.
Does Everyone Understand the True Nature and Prognosis of the Illness?
In some cases, there’s a disconnect between what medical professionals tell patients and their families and what those patients and their family members believe or understand. Sometimes this is due to hope or faith or magical thinking. Other times it’s an honest misunderstanding of a complex issue. But, in order to make good decisions, everyone involved needs to be on the same page as to the reality of the situation. That means understanding the exact prognosis and the likely outcomes of every possible scenario. If you’re organizing this conversation, assessing and addressing this issue is critically important for a successful outcome.
Discuss the Patient’s Goals and Hopes in Light of their Prognosis
Once everyone agrees on the prognosis, ask your loved one to share their goals and hopes for their treatment. This will be a profoundly personal decision informed by the patient’s own history, faith system, and countless other lifetime experiences. Some may want to fight until the end. Others may decide they’re ready to stop fighting and rest. Roughly speaking, patients with life-limiting diseases have three broad treatment options:
- Continue Seeking a Cure: This could mean many things and will be different depending on the exact nature of the illness.
- Accept Palliative Care: Palliative care seeks to address disease symptoms rather than treating the root cause. Some patients might choose palliative care while continuing to seek curative care. Others might opt to only take palliative care.
- Enter Hospice Care: This is a step beyond palliative care. Hospice patients decide to end all efforts at curative care and instead choose to improve the quality-of-life of whatever days they have remaining.
There’s no single correct answer here. And some patients may choose one option and then at some point switch to another. The overall goal is to help your loved one pursue their own path.
Identify Important Care Needs
Your loved one is likely facing uncomfortable or painful symptoms that makes their everyday life difficult. There’s an excellent chance that palliative or hospice care can treat these symptoms and – in the process – improve your loved one’s quality-of-life. During your talk, be sure to ask your loved one about their symptoms. Their answer might help you all determine the best course of action.
Allow the Patient to Make a Decision That’s Best for Them
The key to success through all of this is to allow the patient to chart their own course. To do that, everyone involved must let go of their own hopes and dreams and turn the decision over to their loved one. Then, everyone involved needs to work together to carry out that final plan. It won’t always be easy, but when patients and families act together in accordance to a set plan, they are much more likely to feel satisfied when the end finally comes.
Southland Hospice Can Help
If you or someone you love lives in the greater Phoenix area and have questions about hospice, we’d be happy to help. Give us a call at (602) 497-4100 or fill out or contact form and we’ll get right back to you. These conversations are never easy. But when armed with the right information, you can create a well-informed plan that will help make a difficult process just a little easier.