Most of us use conventional Western medicine, or perhaps traditional or integrative approaches, to help recover from illness, injury or poor health. These treatments are designed to make you better, but sometimes they come at a
cost—chemotherapy, for example, may help fight cancer but can also compromise your immune system and leave you nauseated, exhausted or depressed.
In these situations, palliative care supports symptom relief, side effects, anxiety or emotional toll of serious illness; it enhances quality of life during treatments. You do not need to forego curative measures to receive palliative care. It works in tandem with your existing medical plan and providers and may be covered by Medicare, Medicaid or private insurance. Palliative care professionals also support your emotional wellbeing and help coordinate your care team. Increasingly,
hospitals and clinics are including palliative care practitioners on their teams.
Palliative care can also benefit people who are aware they are dying but aren’t ready to grapple with it or do not yet qualify for hospice. The easiest way to describe it is that all hospice is palliative care, but palliative care can be accessed without being in a position to need hospice.
Some of us will die suddenly— from heart attacks, accidents or by more traumatic deaths. Many of us will face chronic or terminal illnesses. Some choose to pursue aggressive treatment, looking for cure or perhaps simply more time. Others may begin to scale back medical treatments as their bodies change and the treatments become more taxing than beneficial. Our hope is that people will be educated enough that their decisions will align with their hopes and goals.
People usually don’t think of dying as its own experience, but dying is often more complicated and fraught with hurdles and anxiety than death itself. End-of-life choices, advance care planning, and developing an advocacy team are responsibilities necessary to shape the dying process for yourself and for those caring for you in the current end-of-life landscape in our country.
Death is also not a single moment, but a process. Effective preparation for death requires time, attention, and intention, but many people don’t understand the unintended consequences and assume it will all take care of itself. Coming to terms with your mortality helps you understand when ‘quality of life’ may be more important than ‘quantity of life.’ In serious illness, each day may be your best last day. In times like this, questions change: How do I want to live with the time I have? What matters most to me now? What do I need to finish or let go of? While your goals may shift, your core values will guide choices about treatment, relationships and legacy. Being at the end of life means that you have brought all of the important aspects of your whole self — spiritually, emotionally, physically and existentially — into your death.
Hospice care is a form of palliative care that focuses on the final stages of life. More than 5,000 hospices across the country support dying people to live with agency and appropriately-skilled support. Hospice teams work in an interdisciplinary mode — nurses, doctors, social workers, chaplains, nursing assistants, and volunteers meet regularly to coordinate your care based on what you report matters most to you at any given time. They are specially trained to understand end-of-life medications, physical changes, and the process of letting go. They include the dying person AND their family (as defined by them) as a unit of care.
Hospice cares for people in their own homes or in the facilities they live in. Rarely, there are in-patient units to address specific needs. Unfortunately, many people begin hospice care too late—days or weeks before death—missing months of potential support and relief.
Many of us grew up deferring to doctors, even when we didn’t understand what they were saying. In hospice, medical providers are looking to you to lead so they know what kind of care and support you want. We encourage people and their caregivers to be clear about what they want and to ask questions until they understand the answers.
Importantly, hospice recognizes that grieving is a core part of any loss. They provide bereavement care for everyone in the unit of care up to a year after the death.
Hospices differ—some are non-profit, others for-profit; some are faith-based, others secular. Most are committed to high-quality care, but not all are created equal. Hospice care is paid for by Medicare, Medicaid and some private insurance. Ask people you know for recommendations, check for quality measures, and ask questions to find out if each agency is a good match for your goals and needs. You can change hospice providers if you’re not receiving the care and respect you deserve. We find the Hospice Locator to be one of the best to help review different hospices and their offerings. www.nationalhospicelocator.com
The mission of hospice is to ‘neither hasten nor hinder death,’ which means that they cannot participate in any direct care that helps a person die before their body would naturally die. Many hospices will still care for patients making one of these choices, but be clear what their position is and what that means in practice before you select a hospice provider.
Voluntary Stopping Eating and Drinking (VSED) involves intentionally stopping all food and fluid intake. It’s a simple concept, but not necessarily easy. After the first few days, hunger often subsides. Death occurs with the complete cessation of fluids, which may generally take between 3 to 14 days. Hospice provides the best medical support to manage comfort and safety, but while VSED is legal in all US states, not all hospices support this option. Consult with providers before making assumptions.
Medical Aid in Dying (MAID) is legal in 22 U.S. states and DC and is being introduced in others. It allows terminally ill, mentally competent adults to self- administer a specifically prescribed medication to end their life peacefully at the time of their choice. There is an extensive process with safeguards along the way to ensure that no one is coerced.
Final Exit is a lesser-known and less well understood option. It involves a person inhaling an inert gas that ends their life quickly and painlessly at the time of their choosing. Although that person does not have to have a terminal diagnosis, thorough interviewing is done before a person is accepted to begin the process. Strangely but significantly, while these procedures are all legal for a dying person, anyone physically assisting a person using MAID or the Final Exit process may be prosecuted for helping someone die by suicide.
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