Good healthcare depends not only on the skill of the caregivers who treat you and the quality of the facilities you visit but, most importantly, on you.
Aside from trying to keep fit and healthy, you can influence your health by informing your family and team of caregivers about your goals, values, and wishes relating to your care.
It is important to choose care that is right for you and to make those wishes known throughout your entire life – not just when you are seriously ill.
While there are many resources available to assist you in making your plans known, the process nonetheless can be confusing. On this page, we’ll help you learn about such seemingly conflicting terms such as:
A good place to start and a resource from which much on this page is taken
Advance Care Planning is about taking steps to make sure you get the medical care you would want if you were too sick or hurt to express your wishes. Advance directives are legal documents that allow you to spell out your preferences about end-of-life care ahead of time.
Health Care Proxy is the legally accepted form of advance directive. In it, you name a trusted person – known as a Health Care Agent – to make future healthcare decisions on your behalf if you are ever unable to make or communicate those decisions.
Palliative Care can often help patients with serious, life-threatening diseases live better and even longer. It focuses on providing relief from the symptoms and stress of a serious illness, improving the quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses, social workers and other specialists. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
End-of-life Care is often defined by the medical community as care that occurs in the last month’s a person’s life. It helps those with advanced, progressive, incurable illness to live as well as possible until they die. It includes management of pain and other symptoms and provision of psychological, social, spiritual, and practical support through the last phases of life into bereavement.
Hospice Care is a philosophy of end-of-life care that looks at the whole person. Hospice provides an array of comfort and support services to patients and their loved ones. This is usually when a serious illness is no longer responding to treatments focused on a cure. Hospice treatments do not aim to lengthen life. Instead, they focus on ensuring comfort and dignity so that the final months of a patient’s life are as meaningful and fulfilling as possible, for both the patient and family.
This brochure is available to all patients. Not every patient has a serious illness, but we make it available to everyone so that patients who are seriously ill will be aware of their full range of options. If you have a serious illness, it is important that you understand the types of care available to you. This may include primary, specialty, palliative, and hospice care. It is also important that your health care providers know what matters most to you and how you feel about possible treatments.
In this packet you will find information about different types of care that may be right for you.
Learn about our health care planning model, review the Who's Your Agent? Program's Tools Kits and strategies to engage adults and families in planning discussions, and meet your fellow Partners.
This step-by-step tool kit provides Massachusetts-based health care planning information, documents, and discussion guides to start to make a personal plan and put your plan into action.
Getting the best possible care that honors your choices is a lifelong journey. You can make a personal health care plan and direct your care at every phase of health: when Promoting Everyday Wellness, Managing Health and Chronic Illness, and Living with Serious Advancing Illness. This step-by-step kit builds on your planning discussions and adds/updates planning documents all through your lifetime. You’ll find information, tools, and discussions guides to build your plan and put your plan into action.
Those confronting serious care decisions will often be confronted with the need to fill out binding legal documents that express their wishes. The resources below explain the specific steps you can take to ensure your wishes are understood and followed.
Every adult, 18 years and old, or their Health Care Agent and Guardian, has the right to be fully informed about their healthcare to make choices for care that reflect an individual’s values, goals and priorities. Honoring Choices Massachusetts provides no-cost Massachusetts-based health are planning information, the “5 Massachusetts planning documents”, and discussion guides to help consumers and care providers have effective discussions at every phase of health. Adults and families can get started with a ‘do-it-yourself’ 3-step planning guide to create their own personal healthcare plan.
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. As the initiative states on its website: “It’s time to transform our culture so we shift from not talking about dying to talking about it. It’s time to share the way we want to live at the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves. We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people we love, before it’s too late.”
Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) is a standardized medical order form for use by clinicians caring for patients with serious advancing illnesses. It relays instructions between health professionals about a patient's care. MOLST is based on an individual's right to accept or refuse medical treatment, including treatments that might extend life. MOLST is very different from a healthcare proxy form, which is a legal document that transmits your wishes after you have lost capacity. A MOLST form, on the other hand, is a medical document signed by both the clinician and the patient, and is effective as soon as it is signed, regardless of a patient’s capacity to make decisions.
Advanced Dementia A Guide for Families
The purpose of this guide is to provide information to the family members and individuals responsible for making health care decisions for patients with advanced dementia. The guide is organized into 10 sections. The topics and contents for these sections were developed by health care professionals, including geriatricians, nurses, palliative care specialists, and medical researchers, based on their clinical experience and the latest research in the field of advanced dementia. Family members of patients with advanced dementia have also contributed to the guide in order to reflect their viewpoints and concerns.
The guide covers issues that most commonly confront decision-makers caring for patients with advanced dementia. The guide is meant to serve as a resource to provide support when sensitive and challenging decisions must be made. The information is intended to complement and encourage, but not replace, counseling by the patients’ direct health-care providers. A section has been provided at the end of the guide for notes and questions that a health-care provider and support team can answer.
Under the state’s reform law, Massachusetts formed the Massachusetts Expert Panel on End-of-Life Care that in 2010 produced this comprehensive report: Patient-Centered Care and Human Mortality: The Urgency of Health System Reforms to Ensure Respect for Patient’ Wishes and Accountability for Excellence in Care.
Since the state report, the care giving community in Massachusetts has redoubled its effort to be respectful of the wishes of patients facing serious illness and to improve care for them.
The healthcare community in Massachusetts – defined by its thoughtful, high-quality care to patients across the continuum – is redoubling its effort to be respectful of the wishes of those facing serious illness.
A variety of resources exist to inform caregivers of the current thinking about serious illness care, to allow them to share best practices, and to guide patients and their families during the most trying of times.