Q: How can I make sure I will be comfortable and pain-free at the end of life, both for my benefit and that of my family?
A: Hospice care is the answer, whether you receive that at home or in a hospice facility. The guidelines for hospice are 6 months or less. Well, it would be a joy if people could have at least 6 months of quality time in hospice. There is a lot of end-of-life work that can happen with patients and with families. Hospice is not a place per se; it’s a philosophy of care that helps the patient and the family.
If you are really worried about end-of-life pain, particularly if you have had a lot of pain with the cancer, you might be fearing that it will get worse, or you can’t imagine how it could get any worse. In this day and age, there is no reason anyone should die in pain. With all that we have available to us, all the different specialties with hospice and palliative care, there is no reason this should ever happen.
Now, there is a tradeoff with alertness, and sometimes people aren’t as coherent when they’re taking pain medication. What I will tell people is that toward the end you will probably be less aware, but likely still able to hear what’s going on, although not necessarily able to respond. So, you may feel like you’re kind of in and out of consciousness. There may be times you want to pull back on the medication so you can be more alert and present with your family. I had one patient who told me, “My granddaughter is coming home from college today and I want to have some good conversation with her, so I’m willing to be in a little more discomfort today so I can be with her.”
Hospice will help you get the right resources set up. Generally, we want to get people on scheduled pain meds in hospice, because pain is something we want to stay ahead of, but there can be some trial and error and even daily adjustments.
I have had lovely moments with people in hospice, because the world gets very small. They can have these beautiful moments, sitting on their couch, feeling comfortable, very relaxed, and just really enjoying a cup of tea with the people they love. I’ve heard often from people, “I wish I didn’t worry so much about this time, because it’s going better than I thought it would go.”
So if you're worried, ask to have a consult with the hospice team even before you sign up for it. Say, “Here are my concerns. What do you have that’s available? How would this be treated?” This isn’t the time to worry about addiction. You should be comfortable no matter what. If and when the time comes that you can’t swallow medications, there are so many other ways to give it: in the cheek, under the tongue, rectally. Some of the things that we have available today are just remarkable. If you’re dying at home under hospice care, hospice workers will teach the family and caregivers how to do it. The hospice nurse may have to visit one, two, three times a week until the pain is managed well, but they are absolutely, 100% the experts on pain management.
They also can help patients and families be creative and think outside the box. There is reiki, energy work, body work, and light massage that is so profound at the end of life and can really help with symptom management. These can help you stay a little more alert and not have to rely so much on the medication. Of course, there isn’t anything wrong with needing medication. It’s just a fine dance between being comfortable and being alert.
The overall philosophy and the intention of hospice, you know, is that a good life should have a good death. What I say to families is, “You’ve given this person such a good life. Now, you know, we have to give them a good death.” And if you feel safe and loved and comfortable, in the end, that’s pretty much what matters, you know? Really, it’s amazing how none of the rest of it matters.
— Kelly Grosklags, LICSW, BCD
For nearly 25 years, Kelly Grosklags has dedicated her practice to minimizing suffering through her work in oncology, palliative care and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a board-certified diplomat in clinical social work. She also earned a fellowship in grief counseling from the American Academy of Health Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly. If you visit Kelly’s Facebook page, you can choose “Like” to receive regular updates and opportunities for interaction. Kelly is also the author of the book A Comforted Heart: An oncology psychotherapist's perspective on finding meaning and hope during illness and loss.