Hospice: A Model of Patient- and Family-Centered Care

By Johanna Turner

It’s all about you now – or maybe it’s about someone you love. Your medical treatments haven’t been helping lately, you know you are getting sicker, and you sense that your time on earth is limited. You are tired of spending many hours visiting multiple doctors. You’ve been worked-up in hospitals and you’ve held your breath for someone to give you answers. You’ve listened to healthcare workers talk about you like you weren’t there. You’ve waited for return phone calls after going through 15 minutes of “press 3 for… at the sound of the tone…”

You’ve had to argue with insurance companies about getting the care you need. You’ve not always understood what you were told, wished for family members’ help with important decisions, and wondered if the doctor really knows what’s best for you. Now it is time for you and your family to come first. Now it’s time to choose hospice care.

Hospice offers comprehensive, state-of-the-art care and support for persons with life-limiting illnesses and those who love them. You may have heard that there is a whole team of professionals and volunteers to provide this care. What you may not have heard is that you are at the center of this team. You tell the team about your story, your hopes, your values. You decide what kind of care is not enough and what is too much. Your hospice team members use their experience and skills to carry out your wishes.

Each patient-family unit is unique, and hospice care accommodates your specific needs. If care can be provided safely in your home and that us where you want to be, your team will do everything it can to make this possible. Regular nursing visits, on-call availability, social work support, help from certified nursing assistants and practical aid from volunteers can fulfill this wish for most families. If age, infirmity or other circumstances make hospice home care too difficult, you may have the option of staying in a hospice facility designed to be home-like and welcoming to your family. Hospice care can also be provided in assisted living or nursing facilities.

Hospice does things your way. If there is a language barrier, multi-lingual staff or volunteers are on hand to help; interpreters will be found, if needed. Hospice patients are of many different cultures and religions, so hospice care is tailored to honor your traditions. If you wish, you may see a hospice chaplain, who works with community clergy of all faiths to respectfully ensure your spiritual care.

Your time is precious. Hospice care starts when you say, “It’s time,” and your hospice team makes every effort to make your time the best it can be. They schedule visits when it works best for you and your family. You have access to expert help at all times; there is no such thing as “hospice office hours,” no waiting for an appointment to find relief from symptoms. Any night or any weekend, help is just a phone call away.

You and your family don’t have to deal with time-consuming insurance claims, either. Hospice handles all the paper work for your insurance, or for the comprehensive Medicare Hospice Benefit. The Medicare benefit covers everything your hospice team deems necessary, including equipment and medications – a great relief. Most Medicaid and insurance plans match the Medicare benefit or provide significant hospice coverage. If you have no insurance and your finances are depleted, you can still have hospice care.
Hospice professionals know that serious illness affects the whole family. You can be assured that hospice will be attentive to your family’s needs as they meet the demands of caregiving; everyone who cares for you can receive emotional and spiritual support. The availability of respite care – a few days in an inpatient facility to give family caregivers a needed break – can help them remain healthy. Hospice bereavement support is there for them later, when they are adjusting to their loss. Hospice professionals are experts in grieving – your own grief, as you face dramatic changes in your life, and your family’s, as they face life without you.

Hospice helps you live your life, and the choices about how it is to be lived are yours. There may be small choices – I love bratwurst and sauerkraut, and I’m going to eat it even if it makes my stomach hurt and I bet I’ll have to call my nurse in the morning – and emotional choices – I want to be at that wedding and I know it’ll be hard, but maybe my hospice volunteer can help me. You and your family may also face very difficult decisions, and you will have the information and support you need to make them – I’ve been on a ventilator since my ALS made it hard to breath, but as I get sicker, I’m not sure… Questioning is encouraged, honesty is valued and no information is withheld. All communication is in understandable language to help you and your family make decisions that are right for you.

Hospice care embodies trust and dignity. Because your hospice team makes time to get to know you, they can collaborate with you and your family to solve problems. You and your loved ones’ opinions will always be heard and your privacy honored. The bottom line: you are the boss, and hospice respects this.

With all the talk about healthcare change, some Americans have been worried that their personal healthcare decisions are being taken from their hands. While this is not the intent of any change in our system, the language is confusing and the topic is emotional. What about my wishes? Who is listening to me? There have even been assumptions that others will decide it is time for you to die. These assumptions are wrong, and hospice is the evidence.

Hospice care is medicine’s finest example of patient self-determination and family empowerment. It’s about listening first, then finding ways to make each day be what you and your family want it to be. Dame Cicely Saunders, the founder of the modern hospice movement, said it best: “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”