At Edwards Group we believe that education is foundational to navigating the issues of aging with as little stress as possible. And with all the misinformation out there about hospice, we thought it would be good to do an article on the topic.
Elisa Cottrell, a former hospital chaplain who handles our marketing and communications, sat down with Kathleen Sgro, founder of Alterna-Care Home Health (and former oncology nurse), and Joseph Sgro, Chief Development Officer for Alterna-Care, to talk about hospice. What is it? Who needs it? And why is it such a powerfully positive experience when done well?
What is hospice?
Hospice is a type of comprehensive and compassionate care for someone facing an advanced or terminal illness. Hospice care addresses the physical, emotional, social and spiritual needs of the patient, while also helping the family with their emotional and spiritual needs. Hospices employ nurses, social workers and chaplains to meet these needs. Primarily, hospice is a home health benefit. This means that patients get to stay in the comfort and familiarity of their own home while they receive hospice services. The nurses, chaplains and social workers come to you and your family.
Who needs hospice?
In addition, if your disease is causing great pain, hospice nurses are experts in managing pain. They also have a much better outcome than nurses who have not been trained in hospice care.
Generally, if you have been given a prognosis of 6 months to live, then you will qualify for hospice. This DOES NOT mean that you are giving up or that you will get “kicked out” after 6 months. You can receive hospice services for as long as you are declining. It is a coordinated effort between all of your medical team to determine if you still need hospice. Sometimes people get better and get discharged. While you receive hospice though, you may not go to the ER. Hospice is about quality of life and making life as good as it can be while you have an advanced disease.
Why should you use hospice?
In addition to effective pain management, there are other very good reasons why hospice needs to be viewed as a good thing and not something negative.
Going in and out of the hospital trying to get acute care, which is only going to cause more stress and pain in the short run, is not a good way to spend the end of life. Most people, if given the choice, would rather die peacefully at home instead of experiencing a series of acute hospital stays or ER visits for the last few months of their life. Yet, that’s what many people inadvertently do because they don’t understand hospice.
Hospice gives patients and families great comfort in a time of great stress. It shouldn’t be done at the last minute when it is too late to provide meaningful moments between the patient and family. During our conversation, Joe Sgro said he “routinely argues that oftentimes hospice is more for the family than the patient.” It gives everybody the time and space to do what needs to be done relationally at the end of life, and that is so very powerful. Frequently, the patient will be ready to stop “fighting” via active treatments of their disease, but the family isn’t ready for that. Hospice can help facilitate that tension and make more meaningful moments possible. Because of the spiritual care and the social workers, hospice is an amazing support system for those dealing with the hardest, and ultimate, transition in life.
Should I wait until my doctor recommends hospice?
Doctors are trained to save lives, and because of that they have a hard time telling patients that it’s time for hospice. According to Joe Sgro, “Doctors are trained to heal. They don’t want to ‘give up’ either,” which is why it is so important to fight the misconception that hospice is “giving up.” Hospice gives people a sense of dignity, and it gives families meaningful time with their loved ones – time that can make the end of the life transition easier and less traumatic.
“Even as someone who has training in end-of-life spiritual care and knows how deeply effective and positive hospice can be, I had trouble getting a real conversation started with doctors and family when my father-in-law was diagnosed with Stage IV cancer,” says Elisa Cottrell. “I knew the important work we all had to do in saying goodbye. In making sure all those things you want to say to your loved ones get said, but it was a hard sell. In the end, we thought we had a few months left with my father-in-law, but we only had five weeks. He never made it to hospice. I still feel very strongly that my father-in-law’s oncologist robbed us from having meaningful time that could have made the transition easier. There are many long-term complications of grieving that will linger with the family because they didn’t have the chance to properly face the situation. Nobody was able to be at peace with what was happening. They were all fighting it. It made for a lot of extra stress then and now.”
And that’s one of the most important things hospice can do. In addition to walking families through the stages of grief and helping them to understand the process better, Kathy Sgro feels that the most important thing Alterna-Care can do is to get the family and patient to the peace stage. This is the truly revolutionary part of hospice that most can’t understand unless they’ve been through it before.
For more on end of life issues, read our article, Approaching End of Life Issues With Forethought here, or check out our post, 5 Misconceptions About Hospice.