Information and resources that support your role in caring for a loved one.
Need to speak to someone by phone about a caregiving issue? There are options to contact someone directly for help.
Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org.
Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts. In this entry, we cover what caregivers should know about advanced directives with Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.
Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007.
Caregiving MetroWest: Why is there such a need to discuss advance directives now?
Judith Boyko: There’s been a lot of talk lately about advance directives – making one’s end-of-life wishes known. Brittany Maynard is one woman whose story continues to make headlines and has sparked a national conversation about end-of-life care.
There are myriad questions that arise when people begin planning for the end: Who will care for me? Will I have pain? Should I donate my organs? What if I’m on a feeding tube? Do I want to relieve my suffering with hospice care? Who do I want with me? Should I ask for a visit from my clergyperson?
These are all important factors to consider. But let’s start at the beginning.
CGMW: What is an advance directive?
Boyko: Put simply, an advance directive is a document that outlines your wishes for end-of-life care. There are two parts to an advance directive: a living will and a healthcare proxy.
CGMW: What’s a living will?
Boyko: A living will is a legal document that addresses your medical preferences and is utilized for your care if you are unable to communicate on your own.
A living will, which is not binding in Massachusetts, is “still potentially useful because they guide Agents and physicians about the types of choices a person would make,” according to the Massachusetts Medical Society.
Living wills indicate the type/s of treatment you do and do not want to receive at the end-of-life. That may include a DNR (do not resuscitate) order or whether or not you wish to be kept alive through artificial means, like a feeding tube. Other things to consider and document: if you’re on dialysis, how long do you want to receive it? If you have an infection, do you want to treat it, or would you rather it progress naturally?
A living will also outlines what your hopes and fears are about your end-of-life. For instance, are you afraid that certain treatments may cause unneeded pain and suffering? Do you hope to reconnect with an old friend or family member?
Living wills enable you to experience end-of-life on your terms. They can address your beliefs, values and even religious tenets. And, they lift the burden off your loved ones of making important decisions under duress.
CGMW: What is a healthcare proxy?
Boyko: Remember Terry Schiavo? She was the woman in a persistent vegetative state whose parents and husband were deeply divided in their opinion of whether or not to remove her life-sustaining feeding tube.
Ms. Schiavo did not have a living will, nor did she appoint a healthcare proxy, who would have been able to speak on her behalf about her preferred medical treatments. Had she done so, the contentious seven-year court battle between her husband and her parents might have been avoided.
Naming a healthcare proxy – someone who can make decisions for you on your behalf – is imperative, even if an individual is not at the end of life.
CGMW: Are there any other documents we should know about?
Boyko: Yes. A medical order form that’s not an advance directive, MOLST (Massachusetts Medical Orders for Life-Sustaining Treatment) is a comprehensive document that contains information about actionable medical orders. It is used by healthcare providers and professionals to determine the type of treatment an individual wants and doesn’t want at end-of-life and is effective “as soon as it is signed, regardless of a patient’s capacity to make decisions,” according to the MOLST website. The form must be signed by the patient and the clinician.
CGMW: Why is it important to make these advance directives?
Boyko: Simply stated, advance directives enable patients at the end of life to experience that stage on their own terms. If you have religious or cultural beliefs that prevent you from receiving certain medical treatments, an advance directive can indicate that.
Second, imagine someone who is typically in good health but who experiences a medical emergency like a heart attack, a stroke or even a car accident. That individual’s family is ill-prepared to deal with the many decisions they will now have to make: decisions about medical treatment, about who will care for their loved one, what kind of funeral their loved one might want and so on. They are grieving. They are scared. And they are all divided on what they think their loved one would want.
However, if the patient has already prepared an advance directive, then some of these decisions will be easier to make – without the additional stress of wondering if they’re doing the right thing.
Finally, but perhaps most importantly, preparing an advance directive enables each individual doing so to be in charge of their own destiny, whether they are able to verbally express themselves at that time or not.
CGMW: What is the caregiver’s role in this process?
Boyko: First, caregivers can broach the issue with their loved ones. Planning for end-of-life is not easy, and to some, it’s downright scary. But caregivers can initiate the conversation at an appropriate time so that together with their loved ones, they can be deliberate in documenting end-of-life wishes.
Caregivers can also ask questions to further the conversation. Some questions may address placement (home, rehab facility, nursing home); treatment (DNR, hospice or palliative care, feeding tube, etc.); and how they want to live their last days. Do they want to be alone? Do they wish to be surrounded by friends and family? Do they want to talk to a member of the clergy?
Second, caregivers can provide comfort and dignity to their loved ones at an extremely stressful time. A person at end of life may feel physical and/or emotional discomfort, and the caregiver will likely be able to ease that discomfort.
CGMW: Are there any rules and regulations about advanced directives specific to Massachusetts that caregivers should know about?
Boyko: As we discussed earlier, living wills are not recognized as legal in Massachusetts. So, in the place of a living will for people who live in Massachusetts, individuals can appoint a healthcare proxy who can speak for them if they are unable to speak for themselves. The healthcare proxy, according to Caring Connections, “goes into effect when your doctor determines that you are no longer able to make or communicate your health care decisions.”
CGMW: Are there any special issues for LGBT caregivers to know about regarding advanced directives?
Boyko: Yes. The Family Caregivers Alliance makes it clear that even if they are legally married, “LGBT couples should draw up advance directives in order to guarantee their rights. All LGBT couples must clearly articulate their desires in legal documents to protect their right and wish to care for one another, leave property and possessions to one another through a will, or make funeral arrangements on the other’s behalf,” according to its website.
While there are many tools available to put legal documents in place, laws vary depending on the state. It is best for LGBT couples and their caregivers to discuss these issues with an attorney who has the knowledge about their state’s laws.
There are a number of other considerations that LGBT couples must heed in order to address legal and financial issues around end-of-life.
For detailed information and resources, visit the Family Caregiver Alliance’s page, “Legal Issues for LGBT Caregivers.”
CGMW: What is Five Wishes? Can it be used in Massachusetts?
Boyko: We love Five Wishes. In fact, we use it with our patients.
Five Wishes is a living will that “helps start and structure important conversations about care in times of serious illness,” according to the Five Wishes website. It’s an easy-to-understand booklet that is filled with space for an individual to document their wishes for care; how he or she wants to be treated; what he or she wants loved ones to know and more. It has plenty of room to write answers as well as details to consider before answering.
The booklet provides information about how to employ Five Wishes as a legally-binding document in the states in which it meets legal requirements.
Another resource that’s very helpful is called The Conversation Project. The website has a wealth of information about how to begin the conversation with a loved one about end of life.