The very word causes a wide variety of reactions. For some it offers comfort and support. For others it means giving up. For a few it is equivalent to a death sentence. In our death-phobic world, it is very difficult to encourage and entice people to have healthy conversations about end of life care, plans and inevitability.
So, here’s a news flash. The death rate is one each. None of us are getting out of here alive. That’s not meant to be a Debbie Downer, fatalistic statement. It’s just the truth. Some of us will die suddenly and without warning. Some of us will die way too young. But a huge majority of us will experience a decline in health that will take time and, ultimately, mean that we have to make some decisions about how to face that final passage.
In our business of selling grief support materials, hospices are a large part of our customer base. Each hospice organization is required by federal mandate to provide thirteen months of aftercare for the family of a patient they served. Can you imagine? Nowhere else are you going to find government rules and regulations that demand that a team of people look after your emotional and psychological well-being for an entire year and beyond! So, the hospice community loves our Special Care series, which contains four books to be sent over the course of the first year after the death. In one package, they are given the tools to fulfill their expectations, and the hospices who use our books love them because they seem to hit the right areas of the grief journey at the right times. (Note: individuals love our Special Care series, too. Just sayin’)
For over thirty years InSight Books has been honored to work with a wide variety of hospice professionals. Their dedication to serving the dying patient and the family is amazing and astonishing. They truly are the guardians of the living and the dying. They stand where few are willing to be.
We’ve also heard some of their frustrations and trials in trying to communicate to the public what they offer and why families should make hospice part of the long-term planning conversation. How do they overcome the myths around a topic that no one wants to talk about?
MYTH—Hospice means that we’ve given up on our family member and are just waiting for them to die.
TRUTH—Hospice means that the patient has been diagnosed with a condition, disease or complexity of issues that could reasonably be determined to be terminal within six months. Another news flash—life is a terminal disease. In these cases, however, there is a measurable time table and outcome to what the patient is experiencing.
But that does not mean that everyone is just waiting for the person to die. Hospice brings an entire interdisciplinary team to the experience, with doctors, nurses, chaplains, social workers, bereavement specialists, health aides, all focused on giving the patient the very best quality of life, for however long that might be, and providing support, information, and assistance to the family as they care for their loved one.
MYTH—If the patient goes on hospice, he/she will give up and die.
TRUTH—Often, the patient is relieved to be surrounded by people whose focus is not on invasive tests, procedures or medications, but solely on comfort, quality and engagement in the decisions and plans. They are given an opportunity to be a person rather than a chart in the medical model. It can be very important for people to know that they will not suffer in their final days, that palliative care and pain management are the specialties of hospice care. Hospice care focuses on caring, not curing, and neither hastens nor prolongs the dying process.
MYTH—It’s uncomfortable having a dying person at home.
TRUTH—While many hospices around the country do have in-patient options, for most people the opportunity to be at home, surrounded by their family, their memories, their personal collections and identity, is such a welcome difference from hospital rooms and sterile environments. They can listen to music, read, talk to visitors, walk in the garden, or just relax in familiar and soothing settings.
Hospice professionals are on 24-hour call for any questions or concerns that the family or patient might have. They provide professional expertise, education and assurances that no one has to walk this journey alone.
MYTH—It’s too soon to talk about hospice
TRUTH—Our 21st Century sensibilities tell us that there’s always an answer, a fix, a solution to every problem. One more drug, one more test, one more trial might just cure everything. And so many families, and medical professionals, wait. And wait. And wait. They see hospice as the very, very last option.
In 2015, the median length of service for hospice patients was 23 days. This means that of the estimated 1.6 to 1.7 million patients who received hospice services that year, half received hospice care for less than 23 days, and the other half received it for longer than that. In fact, the average number of days a patient received hospice care in 2015 was 69.5 days. (http://verywell.com)
So, most patients who could benefit from care for 180 days, are seeing very little of the benefit of being accompanied by end of life care professionals.
Why am I writing about hospice, you ask? First, I’m a huge proponent and believer in the process, in the honesty, in the clear-eyed intentional approach to dealing with death. I’ve seen the relieved faces of family members who knew they were in good hands. I’ve seen the peace on the face of the person in the bed, given a chance to make decisions and plans with knowledge and support. They will not die alone. They will not die in pain. They will not die with loose ends.
But, and there’s always a but, I’m also talking about it because Doug wrote a new book about hospice called A Journal for the Journey. He discusses all of these myths and many more concepts to consider for the family and patient. His life-long mission to assist and guide people on a healthy grief path is also wrapped up in people being able to have a “good death”.
So, we would invite you to go look at our website for the new book, whether you are a hospice professional, or a family member who knows that hospice might be an option in the future.
I don’t just write these blogs for fun, you know. Every once in a while I have to mention one of our products. This one I’m very excited about.
Glenda Stansbury is Marketing Director of InSight Books and Co-Founder of InSight Institute Certified Celebrant Program. She is also a speaker, a trainer, and an observer of life, and one of Doug Manning’s adorable and talented daughters. You may email Glenda at OrdersAndInfo@InSightBooks.com.