For National Hospice and Palliative Care Month, learn what hospice is and how it can help your loved one achieve the quality of life they desire.
November is National Hospice and Palliative Care month, so this week we’ve taken the time to learn more about what hospice care is and the benefits it provides to those at the end of life. Ryan Sturges, a Licensed Vocational Nurse (LVN) at the Zen Caregiving Project, works every day to create strong connections with his clients and make sure they have their best possible day. We sat down with Ryan to discuss what hospice care is, how hospice improves quality of life, and what he recommends to families when discussing end of life decisions.
1) What is hospice care? How would you define palliative care?
Hospice is really a subset of palliative care that deals with the end of life. Hospice is medically defined as a diagnosis of six months or less to live. Palliative care, on the other hand, doesn’t require being anywhere near dying or having a terminal illness. The goal of palliative care is purely to make you more comfortable, as opposed to curing a specific illness. In the medical model, which makes sense for certain conditions, teams want to get to the root of that illness, even if it means going through discomfort.
In contrary, palliative care is focused on your comfort, and how you are experiencing your illness in your body moment to moment. It can be an adjunct to curative treatment, however it is not focused on curing the body from disease. Instead, it is focused on providing comfort during the treatment with whatever pain or nausea you may be experiencing.
2) What's the most important lesson you've learned from your patients and their families?
One of the most important lessons I’ve learned is how healing it can be to recognize when someone is suffering. A lot of the times, families have trouble recognizing suffering, leaving the patient feeling very alone in the experience of dying. Pain, helplessness, anxiety, and fear of dying cannot be assuaged until the patient simply talks about what they’re going through with someone that understands what it is they’re experiencing. Talking makes people feel less alone with that suffering, especially at the end of life.
3) What would you recommend to family members having a hard time beginning that end of life conversation?
I think the way to start that conversation is to talk about what is most important to them in their life right now. Once you start discussing those primary priorities, then you can start to have a more practical conversation about what will happen. For example, you can ask “how would you feel if you weren’t able to go on those long walks with your husband anymore?” or “how would you feel if your treatment made you too nauseous to enjoy your favorite ice cream?”. Having an open-ended conversation around this will lay the groundwork for a more logistical conversation about what care option makes most sense. Too often, families dive straight into the logistics and it can be overwhelming. Most people don’t even know what their options are, so starting with the person’s values and goals will help you make the best possible transition.
4) How do you help your patients make the choices needed to provide them their best possible day?
The really central thing is not that I’m trying to convince people not to have treatment, it’s that I try to connect with the person about what they want their life to be like and what quality of life looks like to them. If treatment is going to help them attain the quality of life they want, then that is appropriate. Some people are willing to tolerate the side effects of chemotherapy for instance in order to have more time to spend with their children - and that makes sense.
For a lot of people who are approaching the end of their life, treatment doesn’t offer much except more side effects. If you don’t think about your goals and priorities, you can end up on auto-pilot just looking for the next treatment. Palliative and hospice care suggests taking a step back to see what’s most important to you. It’s about the patient’s values and how they want to spend their last days.
When I check in with my patients, I make sure to assess where they are here and now. For instance, sometimes there pain is a six out of ten but they don’t want to take as much pain medication because their daughter is visiting and they don’t want to feel all woozy during her visit. Balancing different types of things like comfort, sedation, spending time with your loved one can be complicated, but this guiding philosophy is what’s most important to the person in the bed.
5) What do you try to accomplish when providing hospice care?
Living meaningfully at the end of life.
As a nurse on the floor, I try to be very present with what’s happening for the resident in the moment. It can be hard to do since it requires you to leave the list of things you have on your plate, your own opinions of what needs to happen and your own assumptions. This requires you to be aware of those things and to set them aside. I find that if I focus on being present with where the resident is at, it allows me to tap into my own wisdom and experience, guiding me for what to do or not to do at any given time.
6) How does the Zen Caregiving Project approach hospice care?
Our caregiving approach is called Mindful Caregiving and there are two main pieces to it. One is the day to day and moment to moment experience in our patient’s life, and how I as a CNA can make that experience richer and more meaningful.
Our care brings in the context of the full experience of life, it’s not only pain or the absence of pain, but it’s also the presence of beauty, pleasure, meaning, love, and companionship. That’s something that the medical model is not designed to address. Through our approach, we have the opportunity to bring in meaning through the meals we prepare, the flowers we arrange, and the care we provide to both the patient and family.
The second piece is the way we train our staff and volunteers, training them to have the self-knowledge and emotional resiliency to be present and supportive to our residents even in the most difficult moments.
7) For those interested in exploring topics around mortality and end of life, where would you recommend they go?
We have some online workshops focused on open death and end of life contemplations that are free and available for anyone. We also have our Window into Mindful Caregiving workshop that is done month to month in San Francisco. All of our course info can be found at ZenCaregiving.org.
Ryan’s insights illustrate how hospice care’s emphasis on managing pain and improving quality of life make it a great option for your loved one. If your loved one chooses to have hospice in the home environment, professional caregivers can be a great supplement. Hospice nurses can manage the pain your loved one feels and in-home caregivers can provide 24/7 care to help them have their best possible days every day.