Terms, Topics and Tips for Health Care Planning

Here's a guide to a glossary of commonly used health care planning terms, topics and their definitions, based on Massachusetts law and standardized medical information. This guide is written for adults, but can be used by all health care providers and everyone who cares for the adult.

Our TIPs offer some practical information and provide links to more tools and resources.

For downloadable FAQs and Fact Sheets on many of the topics below, see our Resources page here.

Advance Care Planning

Advance care planning is a process in which you can plan ahead for the type of medical care you want in the future that best reflects your values, goals and care preferences.  You can write down your care preferences in Massachusetts advance care planning documents, such as a Health Care Proxy and Personal Directive or Living Will.

Other planning documents such as a Medical Orders for Life-Sustaining Treatment (MOLST) or a Comfort Care/Do Not Resuscitate Order (CC/DNR) are considered current care planning documents, as you complete these documents with your health care providers when you have a serious illness or advanced frailty to make choices about life sustaining treatment options you want in a medical emergency. However, sometimes a  MOLST and CC/DNR  are considered advance care planning documents.

TIP:  If  your health care provider asks if you have done advance care planning, ask your care provider to explain what they mean, and which documents are they asking about. Also read about Health Care Planning, a lifelong process that includes everyday care planning for good care today and advance care planning to plan ahead for future medical care.

 

Advance Directive

The term Advance Directive refers to care planning documents or directives you do in advance to write down your care preferences for future care. The term advance directives can have several meanings. Sometimes is used as a general term referring to one or more advance care planning documents, such as a Health Care Proxy, Living Will  or MOLST form, to direct your future medical care. The term advance directive can also refer to the Health Care Proxy only, as it is the sole legal document recognized as an advance directive in Massachusetts.

TIP:  If your care provider asks – “Do you have an advance directive?”, ask your care provider if they want to know if you completed a Health Care Proxy, or if you completed other planning documents that might include a MOLST form.

 

Artificial Hydration and Artificial Nutrition or Medically Assisted Nutrition

Artificial Hydration and Artificial Nutrition, also known as Medically Assisted Nutrition,  is a medical treatment that supplements or replaces ordinary eating and drinking by giving a chemically balanced mix of nutrients and/or fluids through a tube placed directly into the digestive tract (enteral) or through a tube directly into a vein (parenteral).

 

Artificial Respiration/Ventilation

Artificial respiration/ventilation is the forcing of air (either by mouth-to-mouth or mouth-to-nose means) into the lungs of a person who has stopped breathing.

TIP: If you have a serious illness or advancing frailty, you can complete a MOLST form (Medical Orders for Life Sustaining Treatment), with your clinician to document your treatment choices regarding artificial respiration/ventilation in a medical emergency.

 

Capacity

The term capacity in health care decision making typically refers to an individual’s ability to make and communicate decisions about their health care, safety and well-being. Generally speaking, adults have capacity if they can understand their medical diagnosis and prognosis, appreciate the nature of the recommended care and the risks and benefits of each alternative, and use logical reasoning to make a decision.  Every person who has capacity to make health care decisions can compete a Health Care Proxy to choose a trusted person as their Health Care Agent. Under MA law, every adult shall be presumed to be competent and every health care proxy shall be presumed to be properly executed unless a court determines otherwise. Read more here.

TIP:  Determining if a person has the capacity or ability to make and communicate health care decisions is a medical determination made by the individual’s attending physician. A nurse, nurse practitioner or other professionals can not determine capacity under MA law. Since a person's capacity can be lost and regained, it is important to ask the person's attending physician to re-assess capacity to protect the person's right to make health care decisions.

 

Cardiopulmonary Resuscitation (CPR)

Cardiopulmonary resuscitation (CPR) is the administration of heart compressions and artificial respiration to restore circulation and breathing. CPR is a set of procedures that may include:

  • Pressing on the chest to mimic the heart’s functions and cause blood to circulate
  • Inserting an airway into the mouth and throat, or inserting a tube into the windpipe
  • Ventilating artificially, through mouth-to-mouth or other mechanically assisted breathing
  • Using drugs and/or electric shock (defibrillation) to stimulate the heart

TIP: If you have a serious illness or advancing frailty you can complete a MOLST form (Medical Orders for Life-Sustaining Treatment) with your clinician to document your treatment choices to attempt or not attempt CPR in a medical emergency.

 

Code Status

Code status refers to a medical order directing treatment if a patient is unresponsive, without a pulse, and/or is not breathing. Typically, code status orders specify whether or not to initiate cardiopulmonary resuscitation (CPR) and intubation and mechanical ventilation. In the absence of a specified code status, the default in health care facilities and emergency medical situations is to attempt resuscitation. A CC/DNR  or MOLST form can state a patient's preference whether or not to attempt CPR and mechanical ventilation, which all licensed health professionals and emergency first responders would follow.

 

Comfort Care/Do Not Resuscitate Verification protocol (CC/DNR) or DNR

Comfort Care/Do Not Resuscitate Verification protocol (CC/DNR) is a followed by emergency medical service (EMS) personnel when encountering an authorized CC/DNR Verification Form outside of a hospital setting. It directs that a patient in respiratory or cardiac arrest be made as comfortable as possible, but that no resuscitative measures be attempted. A CC/DNR must be completed in Massachusetts by a physician, nurse practitioner and physicians assistant after a conversations with the patient about their health condition and their choice not to attempt CPR, but to offer comfort care measures.

TIP: Learn more about the official State of Massachusetts Comfort Care/Do Not Resuscitate Form and view a sample copy here.

 

Comfort Measures Only Orders; or Comfort Care Measures; or Comfort-focused Treatment

Comfort Measures Only (CMO), also known as Comfort Care Measures or Comfort-focused Treatment, refer to medical orders for a seriously ill patient signed by a physician, nurse practitioner, or physician assistant, that indicate a patient’s care and treatment plan is to maximize comfort through symptom management and allow for a natural death.

 

Conservator

A Conservator is a person, such as a family member, friend or a professional person/entity, appointed by the MA Probate & Family Court, to manage the money, property, and business affairs of a disabled or incapacitated person. The Conservator acts as a substitute decision-maker  to prevent the property from being wasted or dissipated, and to provide for the financial support, health care needs, and well-being of the individual. The conservator’s duties can include managing the individual’s bank accounts, paying bills, signing contracts to arrange for and pay for health care and living expenses and more.

 

Conservatorship

Conservatorship is a legal process considered for adults who are disabled or incapacitated and are unable to make or communicate decisions about their money, property or business affairs, The MA Probate and Family Court can appoint a person or entity as a Conservator, to ensure the estate is not wasted or dissipated, and to provide for the financial support, health care needs and well-being of the individual. A conservatorship can be limited to areas where the adult’s ability is impaired to protect the rights and independence of the individual.

TIP:  If conservatorship is being considered for an individual, always explore Alternatives to Conservatorship and any least restrictive ways to manage the financial affairs of a disabled or incapacitated person. To learn more, see the  Mental Health Legal Advisors Committee Alternatives to Conservatorship fact sheet here

Dementia

Dementia is not a specific disease but an overall term that describes a wide range of symptoms and conditions. Dementia is associated with a decline in memory, thinking skills, and communication skills to the point that the decline effects an adult’s ability to perform daily tasks. There are many types of diagnosed dementia conditions such as Alzheimer’s disease, Vascular Dementia, Lewy Body disease, Frontotemporal Dementia and others. Dementia can be diagnosed at several stages, as early, middle or late stage dementia.  A dementia diagnosis alone may not tell you whether an individual has the decision making capacity or ability to sign a Health Care Proxy and participate in health care planning. If you are unsure whether a person has the ability to make effective health care decisions, ask the person's attending physician to evaluate the person and make a medical determination.

TIP: The Alzheimer’s Association 24/7 Helpline (800.272.3900) provides free confidential support and information to people living with the dementia and their caregivers, families, health care providers and the public. Anyone call call the Helpline for support.

 

Dialysis

Dialysis is a type of treatment that helps your body remove extra fluid and waste products from your blood when the kidneys are not able to.  Dialysis filters the blood through a machine via two small tubes inserted into the body. The process removes waste products from the body in the way that the kidneys normally do. Dialysis can be done temporarily in order to allow the kidneys time to heal, or it can be done on a longer term basis in order to prolong life. Read more here.

 

Do Not Hospitalize Orders (DNH)

Do Not Hospitalize Orders (DNH) are medical orders, signed by a physician, nurse practitioner or physician assistant, that instruct health care providers not to transfer a patient from a setting (such as a nursing facility or the patient’s home) to the hospital unless needed for comfort- focused treatment.

 

Do Not Intubate Orders (DNI)

Do Not Intubate Orders (DNI) are medical orders, signed by a physician, nurse practitioner, or physician assistant, that instruct health care providers not to attempt intubation in the event of respiratory distress.

 

Do Not Resuscitate Orders (DNR)

Do Not Resuscitate Orders (DNR) are medical orders, signed by a physician, nurse practitioner, or physician assistant, that instruct health care providers not to attempt cardiopulmonary resuscitation (CPR) or endotracheal intubation in the event of cardiac and respiratory arrest.

 

Durable Power of Attorney

A Durable Power of Attorney is a legal document in which you appoint a person you trust, called an Attorney-in fact, to manage your money, property and business matters if in the future you become disabled or incapacitated and are unable to manage your financial affairs yourself. You choose which powers or authority you want to give your Attorney-in fact to act on your behalf.  It can be as simple as giving the power to write monthly checks for your expenses, or managing your property or financial investments.

TIP:  Under MA law, it is not required that a lawyer assist you in completing a Durable Power of Attorney, but it is recommended.  A experienced lawyer can help safeguard your money and property, no matter how big or small, and provide advice about what's best for you in giving powers to your Attorney-in-fact.  You can read more about a MA Durable Power of Attorney here.

 

Guardian

A Guardian is a person, such as a family member, friend or a professional person/ entity, appointed by the Probate and Family Court to make some or all personal and health care decisions for an incapacitated person. Under MA law, the guardian "shall encourage the incapacitated person to participate in decisions, to act on his own behalf, and to develop or regain the capacity to manage personal affairs." A guardian advocates for the autonomy of the individual, and considers the person's expressed desires and personal values when making decisions. Read more here.

 

Guardianship

Guardianship is a legal process where the court can appoint a person to be a Guardian to safeguard the rights of an incapacitated person and make personal and health care related decisions on behalf of the individual. A Limited Guardianship is preferred in Massachusetts whenever possible, in which a guardian’s decision making authority is limited only to areas where the incapacitated person is unable to make effective decisions about his or her safety, health, education and well-being. The incapacitated person retains the authority to make his or her own decisions in all other areas. Read more here.

TIP:  If Guardianship is being considered, always explore Alternatives to Guardianship to safeguard the autonomy of the incapacitated person. Read more about Alternatives to Guardianship at the Disability Law Center here. Read more about Massachusetts Guardianship law here.

 

Health Care Agent

Adults 18 years old and older can appoint a trusted person as their Health Care Agent in a legal document called a Health Care Proxy.  A Health Care Agent (Agent) has the legal power to make health care decisions on the adult's behalf if the adult is unable to make or communicate health care decisions, even for a short time while the adult recovers from an injury or illness. An Agent is your advocate to talk with your health care providers, discuss your treatment options, and help get the kind of care you want. The adult can give their Agent the same decision-making authority the adult has, including the right to refuse medical treatment or agree to medical treatment, and the right to make life-sustaining treatment decisions and sign a MOLST form, Medical Orders for Life-Sustaining Treatment.

TIP:  Learn more in our downloadable fact sheet-"Choosing a Health Care Agent: What does an Agent do?" here. The Health Care Agent's role is outlined clearly in the MA Health Care Proxy Law here.

 

Health Care Planning

Health care planning, as defined in the Honoring Choices MA Who's Your Agent? Program®, is a lifelong planning process. Health care planning involves both:

  • Everyday planning, where you and your care provider talk about your current care goals, health condition and treatment options, in order for your care provider to offer care that reflects your care preferences to improve everyday health and well being; and,
  • Advance care planning, where you can plan ahead for future care and write down your care preferences in Massachusetts planning documents, to let others know how you want to be cared for if you are not able to make health care decisions yourself.

TIP:  The Honoring Choices MA  Who's Your Agent?® Program has everything you need to start to make your own health care plan with free downloadable planning documents. Read more here.

 

Health Care Proxy

Health Care Proxy is a legal document in which you appoint a trusted person, called a Health Care Agent, to make health care decisions on your behalf if you become unable to make effective health care decisions for yourself.  In Massachusetts we must appoint a Health Care Agent in a Health Care Proxy document in order to give the Health Care Agent the legal decision-making authority to make health care decisions. Completing a Health Care Proxy is voluntary. Under MA law, a person can not be required to complete a health care proxy as a condition for providing health care services or insurance of the individual.  Read more here.

TIP:   You can complete a Health Care Proxy yourself; you do not need a lawyer or a notary public. You can download a free Honoring Choices MA Health Care Proxy, available in 15 languages, here.  You can also view the short video "How to Complete an Honoring Choices Health Care Proxy" See video here.  Read more about the full MA Health Care Proxy law here.

 

Hospice

Hospice is medical care for individuals with a terminal or serious illness resulting in a life expectancy of six months or less, when curative treatments are no longer an option.  Hospice care focuses on symptom management and is tailored to the specific physical, psychosocial and spiritual needs of the person. Hospice care also includes support for family and caregivers during the dying process and often provides bereavement services.

TIP: Read more about Hospice Care, and see the helpful Hospice Locator, at the Hospice & Palliative Care Federation of MA here.

 

Incapacitated Person

An incapacitated person is an individual who for reasons other than advanced age or minority has a clinically diagnosed condition that results in an inability to receive and evaluate information or make or communicate decisions to such an extent that the individual lacks the ability to meet essential requirements for physical health, safety, or self-care, even with appropriate technological assistance.

 

Life-Sustaining Medical Treatments

Life-sustaining treatments refer to medical procedures such as cardiopulmonary resuscitation, artificial hydration and artificial nutrition, and artificial ventilation/ breathing and other medical treatments intended to prolong life by supporting an essential function of the body when the body is not able to function on its own.

 

Living Will

A Living Will is a personal care planning document where you can write down what's important to you and give your Health Care Agent, family and care providers information about the care you want and do not want. Although a  Living Will is not legally binding in Massachusetts, it is an essential part of your health care plan. It's "your voice" for the care you want when you are unable to make or communicate health care decisions for yourself.

TIP: The term Living Will is often confused with a Last Will and Testament, two very different documents. A Last Will and Testament documents how you want to distribute your estate after you die.   A Living Will gives instructions to your Health Care Agent and others on how your want to be cared for while you are  alive, if your become sick or injured and are not able to make health care decisions yourself. Honoring Choices created a no cost Living Will, called a Personal Directive (Living Will), available here in five languages.

 

MOLST, Medical Orders for Life-Sustaining Treatment

Medical Orders for Life-Sustaining Treatment (MOLST) is a medical order, intended for seriously ill patients or those with advancing frailty, that documents a patient’s decisions for life-sustaining treatment.  A MOLST form, like other care planning document is VOLUNTARY.  A MOLST form is completed by a clinician and a patient after a discussion with a patient about their health condition, the benefits and risks of life-sustaining treatment options, and a patient's goals and care preferences.  Typically the physician will offer treatment recommendations that align with the patient's goals and care preferences. The patient makes decisions about their treatment choices and the clinician transfers the patient's treatment choices onto the MOLST form. Both the clinician and patient sign the MOLST form which become immediately effective. Every licensed health care providers who treats the patient should honor the MOLST form across all care settings. The MOLST form is designed to be updated regularly as your health needs and treatment choices can change over time.

TIP: It is important to have a full conversation with your clinician about your illness and understand the benefits and risks of treatment options given your particular health condition before signing the MOLST form. Read more about the MOLST form here. See the sample form here. 

 

Palliative Care

Palliative Care is specialized medical care for individuals living with a serious illness.  This type of care provides relief from the pain, symptoms and stress of living with a serious illness. Palliative care can be offered to a person at any age (infant to adult), for any serious illness, and at any stage of illness from first diagnosis to end of life care. A care team of physicians, nurses, social workers, faith-based clergy or chaplains and other specialists come together to offer an added layer of support to patients to live as well as possible with a serious illness, and also provide support to their families and caregivers. Palliative Care can be provided at the same time a patient is being treated to cure a serious illness, or provide comfort care when curative treatments are no longer an option. Palliative care can be provided in a health care facility or a community-home based setting.

TIP: Palliative Care is for any person with a serious illness- any age, any illness, and any phase of their care. You can read more and download a fact sheet here, and view videos here.

 

Personal Directive (Living Will)

The  Honoring Choices MA Personal Directive (Living Will) is a personal document or personal statement in which you give your Health Care Agent and anyone who cares for you information and instructions about what's important to you and how you want to be cared for if you are unable to make health care decisions yourself. The Personal Directive is a also an easy to use discussion guide to start a simple planning conversation to write down your care preferences. A Personal Directive is not a legal document, but provides invaluable information and instructions to your Agents, care providers and everyone who cares for you. It is also commonly known as an advance care directive, a living will, or medical directive.

TIP: You can download a free Personal Directive (Living Will) in 5 languages on our Resources page here.

 

Serious Illness 

Serious illness is a health condition that is life-threatening, and either negatively impacts a person's daily functioning or quality of life or excessively strains his or her caregivers. 

Serious illness care is provided to individuals of any age, from infants to older adults, living with a serious life-limiting medical condition or advancing frailty.

Serious illness conversations between patients and clinicians can start at first diagnosis of a serious illness, and continue through changing treatment options to end of life care. It's a time when:

  • Clinicians and Patients or their Health Care Agents & Guardians (legal advocates) have conversations about the patient's medical condition, care goals and treatment options;
  • Patients/legal advocates make treatment choices about the kind of care they want and do not want, and can document their choices in a MOLST form;
  • Clinicians and Patients/legal advocates work together to honor patient choices and offer the best possible care throughout serious illness and at end of life;
  • Patients and families may need specialized care throughout serious illness, such as adult and pediatric palliative care, behavioral health services, hospice care, and community/ home-based services.

TIP: A person with a serious illness or advancing frailty can complete a MOLST form with their clinician after a serious illness conversation. It's also helpful to complete Health Care Proxy to choose a Health Care Agent to make health care decisions on your behalf, if you are unable to make health care decisions yourself.  

 

Supported Decision Making

Supported decision-making is a way of making decisions that people with disabilities or adults subject to guardianship can use. Supported decision making is an alternative to guardianship where individual's can retain their rights to make their own decisions with the assistance of one or more support persons, called supporters.  The supporters can help with decisions about living arrangements, health care, financial matters and offer assistance in these and other areas. Read more here. Download a fact sheet here.