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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 discuss the issues involved in end-of-life care and what caregivers should know about end-of-life care. Providing insight is 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. She can be reached at email@example.com or 508-651-1786.
Boyko: “In this world nothing can be said to be certain, except death and taxes.” Ben Franklin was onto something when he famously said this.
So why is death – and end-of-life, which encompasses more than the “dying process” – such a taboo subject?
Perhaps it’s the sheer somberness of it all.
However, despite the challenges of talking about and facing end-of-life, it’s something that we all should be doing. You’ve heard the expression “live your best life,” so why not take it full circle by indicating to those who matter – friends, family, loved ones, doctors – how we wish to spend our last days?
Caregiving MetroWest: What is end-of-life care and what should caregivers know about it?
Boyko: The term “end-of-life care,” according to the National Institutes of Health, “is the broad term used to describe the special support and attention given during the period leading up to death, when the goals of care focus on comfort and quality of life.”
CGMW: When should you talk to your loved one about preparing for end-of-life care, and are there any strategies for having such a conversation?
Boyko: Imagine your loved one is in perfect health. Now imagine that a health event takes place and diminishes your loved one’s ability to communicate. Now what? You and your family are now under pressure to figure out what kind of care and medical intervention your loved one may want. Without their input.
Ideally, the end-of-life conversation takes place well in advance of a health event – like a heart attack, stroke or diagnosis of an illness. If your loved one suffers from a chronic condition, the earlier the conversation takes place the better. Proactively minimizing additional stress during a difficult time is advisable.
Now the big question: how does the conversation begin? There are myriad tools available for families to help them get started with “The Conversation.”
Aptly named, The Conversation Project has a starter kit that provides “a shared understanding of what matters most to you and your loved ones. This can make it easier to make decisions when the time comes,” according to the kit’s introduction.
Five Wishes, a living will developed by Aging with Dignity, “helps start and structure important conversations about care in times of serious illness.”
Death over Dinner is a national program that encourages discussing end of life issues with anyone, really, over dinner.
Other tips to begin a conversation can be found in AARP’s “Beginning the Conversation about the End of Life.”
CGMW: What should you do to make sure your loved one’s wishes for final treatment are honored?
Boyko: The most important action one can take before tragedy strikes – so there’s as little stress or duress on the family as possible – is to complete an advance directive, which has two parts: a living will and a healthcare proxy. These are critical to receiving the end of life care you want.
The living will serves as your “voice” about preferred medical preferences if you become incapacitated or can’t communicate these wishes on your own. It outlines the type of treatment you wish to receive – and to not receive – in your final days. For example, do you want to be kept alive through artificial nutrition or hydration? Do you wish to receive dialysis or ventilation? What are your funeral preferences? A living will also may include a DNR – a Do Not Resuscitate order – which means that if your heart stops beating, you will not want resuscitation.
It’s important to note that a living will is not a legally binding document in Massachusetts, so it’s advisable to list your end-of-life preferences in your healthcare proxy, a legal document that may be prepared by any adult at any point, regardless of whether she is ill or not.
A healthcare proxy is a form that indicates that person’s “agent,” someone she appoints to make decisions on her behalf if she’s unable to do so herself. A Health Care Proxy form can be accessed via the Massachusetts Medical Society. It’s only in effect when the patient is unable to speak for herself and express her wishes for treatment.
Finally, a MOLST form – Medical Orders for Life Sustaining Treatment – indicates the type of care and/or medical intervention the patient wishes to receive at the end of life. More granular and specific than a living will, MOLST “is a medical order form (similar to a prescription) that 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,” according to the Mass. Medical Society.
A medical document, the MOLST must be signed by both the patient and a clinician (or the health care proxy if the patient is unable to sign) and goes into effect as soon as it’s signed.
CGMW: What does a caregiver need to know about end-of-life care if a loved one has Alzheimer’s or another dementia?
Boyko: A degenerative disease like Alzheimer’s diminishes one’s cognitive functioning as well as limits one’s physical capabilities. Alzheimer`s disease progresses in three stages.
Early-stage Alzheimer’s disease, according to the Alzheimer’s Association, can include problems remembering the right words for things; difficulty remembering people’s names; and forgetting about something that was recently read, to name a few.
Patients with middle-stage Alzheimer’s disease may experience forgetfulness about their life; moodiness or withdrawal in social settings; an increased risk for wandering; and forgetting where one lives, for example.
Patients with late-stage Alzheimer’s may lose track of their surroundings; have a harder time communicating; require assistance with activities of daily living; and “experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow.”
Due to the degenerative nature of Alzheimer’s disease, family members should consider discussing end of life wishes with their loved one as soon as they receive a diagnosis. This helps to ensure that her end-of-life wishes are carried out when necessary.
CGMW: What is hospice and when should you consider it?
Boyko: Here’s how the National Hospice and Palliative Care Organization (NHPCO) describes hospice: “Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.”
A few factors may contribute to an individual’s or a family’s decision to begin hospice care:
• Treatment is no longer working or is too painful to endure
• The patient wishes to shift her focus to managing her quality of life – less pain or discomfort, for example – rather than focusing on a cure
• Symptoms or pain that are too much to manage
• The patient is given a prognosis of six months or less to live
• Family caregivers find it overwhelming to care for their loved one and need professional help
CGMW: How should you talk to your loved one about death?
Boyko: There’s really no correct answer to this question. There are myriad feelings that one is faced with at the end of life: sadness, regret, hope, fear and grief are just a few of them.
Talking about death is difficult, to say the least. But with some helpful tips and resources outlined earlier, the conversation can be less stressful. Here are a few tips on how to talk about death with a loved one.
Don’t push it. With such a sensitive topic, be sure that both you and your loved one are in the right frame of mind to speak honesty and openly. The conversation will be more like a series of conversations that take place over a period of time. Don’t rush it.
When your loved one expresses an emotion, go with it. “Acknowledge that these may be influencing what you say or how you behave. This will help your loved one to understand,” according to the Caregivers Library. And don’t try to fill any lulls; a moment of silence (or a few moments) may provide your loved one the opportunity to be deliberate about what she’s saying or broach other important subject matter to her.
The Funeral and Memorial Information Council suggests asking open-ended questions. For instance, start by asking about family traditions, your loved one’s childhood, important people in her life, and even about her proudest accomplishment. When focusing on the past, you can shape the conversation to look toward the future. In fact, some of your loved one’s answers may shape the conversation directly and provide the perfect segue to talking about end-of-life.
Finally, The Conversation Project says that “Having the conversation may reveal that you and your loved ones disagree. That’s okay. It’s important to simply know this, and to continue talking about it now—not during a medical crisis.”
CGMW: How do you deal with the loss of a loved one and the sadness and other emotions that come with it?
Boyko: Grief is an incredibly complex emotion. And it doesn’t end when your regular routine picks up again after a loss. Someone who is grieving may experience both mental and physical issues. They may include loss of appetite or sex drive; intense bouts of crying and/or sobbing and sorrow; restlessness; headaches; weakness; guilt; stress-related issues; feelings of sadness and yearning; irritability; a sense of despair; and more.
It’s incredibly important to recognize that grief can manifest itself in many different ways, and each person’s grief process varies.
Some of the ways to deal with grief include:
• Attending a support group (check your local senior center or Council on Aging to find one near you)
• Planting a tree to memorialize your loved one
• Planning ahead. The first year after the loss of a loved one is especially difficult, as it will be filled with first anniversaries of important events – birthdays, holidays, milestones. Make arrangements to honor your loved one ahead of time so strategies are in place.
• Taking care of yourself; exercise, eat well and get rest
• Trying to have fun. Just because you’re grieving does not mean that you can’t also have a good day to remember.
Life is complicated. But end-of-life planning doesn’t always have to be. With the right amount of knowledge, preparation and support, you as a caregiver can serve a critical role to your loved ones – from beginning to the end.