23 Nov, 2021
It is not about dying; it is about living the best possible day today
Jennifer Ritzau, M.D., medical director and director of palliative care at HopeHealth, and Gus Manocchia, M.D., senior clinical consultant at Blue Cross & Blue Shield of Rhode Island
The COVID-19 pandemic has reminded us just how quickly and unexpectedly a person’s health can change. Those tasked with helping to manage a loved-one’s care often assume there will be plenty of time to talk about end-of-life care decisions. But, knowing what your parent or loved one wants – and doesn’t want – can make it easier to navigate those challenging healthcare crossroads. It’s never too early to discuss together as a team – patient, family and healthcare provider - what a patient’s goals and hopes are and then help to support those wishes as best we can.
The best place to start is by knowing the resources that are available to you, resources that can jump start conversations about the loved one’s wishes and what sort of care they want to receive throughout all stages of life, but especially at the end of their life.
Lay the foundation with strong provider relationships
Determining the type and level of care a patient wants and needs is a highly personalized process, unique to every individual and their situation. Having conversations about palliative care—which is not end-of-life care, but rather symptomatic care for patients who have a long-term severe or life-threatening illness, like cancer—is not something families need to weather alone.
Palliative care is all about managing symptoms; and works best coordinated as a team with a care provider, patient and their family. Connecting with primary care providers as soon as possible after a diagnosis (if not before) helps create an open dialogue to explore all care options to ensure a truly patient-centered experience.
Start hospice care earlier
Hospice care is support provided to patients during a terminal illness, typically reserved for people who are facing the last six months of their life. However, we find that some people enter hospice care just days before dying. As physicians, it can be difficult for us to “lose" the battle against a disease when our purpose is to cure. And, families naturally want as much time as possible with their loved one. But, starting hospice care earlier can help your loved one live the most fulfilling and comfortable life in the time they have. In recent years we have worked to “rebrand" hospice care if you will, so that it’s less about giving up and more about ensuring the best days possible. Meeting with a hospice specialist earlier rather than later can help ensure your loved one lives life on their own terms.
Additionally, sometimes families don’t realize that a patient qualifies for hospice care. Conversations with providers and the patient’s health insurer should happen as early as possible in the care journey in order to access the appropriate level of care where and when you need it.
Determine advance directives long before you need them
Advance directives are a patient’s expression of what level of care they would like toward the end of their life. These directives can include things like a living will, durable power of attorney for healthcare, do not resuscitate or “DNR" orders, and organ and tissue donation. Unfortunately, some people wait to establish advance directives until it’s too late – when patients physically or mentally are unable to express their wishes.
These conversations can feel morbid and uncomfortable for many, but wouldn’t many of us rather know exactly what our loved one wants in the event of a life-threatening illness, instead of wondering if we’re making the right decisions if they can’t speak for themselves? Discussing advance directives far before you ever think you’ll need them is the easiest way to ensure a more peaceful situation for family members down the line.
Start the conversation today
Think about the things that are important to you for living – when would you not want to continue? Would it be if you couldn’t drink or eat food normally? If you couldn’t get out of bed? Do your loved ones know what you would want, and do you in turn know what they would want? It’s never too early to have these conversations. At HopeHealth we offer a document called “A Gift of Preparedness" to help guide you through these discussions and decisions. Your primary care providers are there to help as well and can be an invaluable resource. As healthcare providers, it’s our job to help you live the best, healthiest life you can, so don’t hesitate to include your care team in discussions or to ask questions. It’s time to normalize talking about end-of-life care.
There are some great resources available locally to help guide you:
- HopeHealth: A non-profit organization in Massachusetts and Rhode Island, supporting patients and their families through all stages of illness, providing hospice care, palliative care, home care, and dementia and Alzheimer’s support services.
- Medical Orders for Life-Sustaining Treatment (MOLST): A document designed to improve the quality of care patients receive at the end of life by translating patient goals for care and preferences into medical orders.
- Rhode Island Department of Health: Advance Directives: A resource page outlining helpful information about drafting a will, establishing power of attorney, MOLST, and other end of life issues to consider.
- The Rhode to Health Podcast: Hosted by Blue Cross & Blue Shield of Rhode Island.