November is the National Hospice Palliative Care awareness month and this years’ theme is Courageous Conversations. These conversations can include hospice care, decision making for those final stages, and after-life choices. Simply having conversations for the terminally ill person to make those decisions can be both challenging and saddening.
There are ways that we can make it productive, yet still be sensitive to the person and their situation. We can begin this conversation by finding a private area where the person feels comfortable. It is important not to push the person into discussing anything as these decisions are quite difficult to make, and sometimes difficult to understand.
So, how does one begin the conversation about looking into Hospice? hrvv.org recommends these five conversation starters:
- “That last hospital stay seemed hard on you. I think there is a way we can avoid future hospitalizations.”
- “We can figure out how to manage your care at home.”
- “You don’t have to be in pain anymore, Hospice can help. They’re experts in pain management and caring for people with this illness.”
- “Lately, you seem to be struggling more with breathing, walking and eating.”
- “I’d like to call Hospice for you so we can see how they might be able to help you.”
If there are any pushbacks from the patient, do not force them and hold off for a different time to discuss. Give them time to process everything and respect that they may not have all the answers right now. As the decisions are being made, it is very important to respect them. What you would think is best, what their other loved ones want, and what they want can be completely different. Ultimately, it’s their life, memories, religion, and preferences.
There is a unique and fun way to begin those conversations that might make it an even more relaxed setting. The game Common Practice is a conversation game geared around living and dying and what things matter. Questions include “if you needed help going to the bathroom today, who is the first person you would ask to help,” and “who haven’t you talked with in more than six months that you would want to talk with before you died.” Asking these questions may not provide all the answers but it can lead to insight as to what is important to your patient. Be sure to track answers so that you can pass on any of those if they were to come about.
Once the more relaxed stuff has been discussed and your terminally ill patient is ready to deal with the heavier stuff, there are several things they should take care of. These things include establishing a Will and/or a Trust, Power of Attorney (legal and medical), HIPPA forms, and Marriage, divorce, or death certificates of their spouse. They should consider taking inventory of their assets, provide passwords and log in information for their computer, update financial documents and beneficiaries, address health care expenses, plans for any dependents or pets, as well as plans for Hospice or Palliative Care.
Faith Brar, journalist at Optum Perks, explains in her article that knowing what not to say to someone who is dying is just as important as the things you should discuss. Those go-to things we’ve all said at times, such as “I know what you are feeling,” “everything will be ok,” or “everything happens for a reason,” those are all phrases to avoid. We don’t know how they are feeling, there is no guarantee everything will be ok, and thinking there is some ulterior reason behind their illness can be very counterproductive. Be sure to listen before you speak and make yourself available when they are ready. Try to maintain a sense of normalcy in their presence yet be considerate of their physical abilities and energy level. Refrain from offering advice and know it’s important for them to vocalize their needs and wants. And, in turn, to not allow others to make choices for them. Ask them how you can be what they need or ways you can provide comfort or support.
In the meantime, encourage them and their family to start creating lasting memories now before they are unable to do so. Even if they cannot physically participate in activities, having them included is just as important. Encourage them to go through photos, do arts and crafts, visit places they enjoy or have always wanted to go to. Encourage family and friends to record them so they always have their voice, write letters back and forth to keep a copy of their handwriting, and take pictures and document events. They will be able to look back with peace and find that they had a great time celebrating the final stage of their life with the people they love.
For their family and friends, remind them not to hesitate to seek help for support and advice. Watching someone they love go through this is a heavy grief, and it’s hard being unable to help them in the ways we wish we could. Educating oneself on terminal illness, how it will affect the body and how to make them more comfortable will be beneficial for both the supporter and the terminally ill. And, having them join a therapy group or go to an individualized therapy session can be a great source of support and help with the healing process.