Wills
Arrangements to Make When You or a Loved One Has Terminal Illness
If you or a loved one has been diagnosed with a terminal illness, you are likely to be flooded with emotion and may be unsure of the next step to take. It’s overwhelming to receive such life-changing news. Take the time you need to digest and process this information, then begin to prepare for the next steps. There are practical arrangements that need to be made to help make the coming days easier. Let’s discuss a few important arrangements to take care of that can benefit not only you but also your surviving loved ones.
Determine Plan of Care
When you have received the terminal diagnosis, one area to consider is your plan of care. First, talk to your doctor regarding available treatments and whether they are in your best interest. They may not save your life, but they may extend it. You also want to consider whether you would like to receive palliative care. According to Verywell Health, palliative care can begin at diagnosis, unlike hospice, and will help improve your quality of life and ease your symptoms. Patients receiving palliative care often live longer, experiencing relief from ailments and discomforts. Research which company you would like to receive care from and discuss the anticipated timeline of care with your doctor and loved ones.
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Advanced, palliative care plans important part of life
Published in Cleveland Jewish News by Becky Raspe
It’s best to be prepared in every situation, especially when it’s health-related.
According to Rabbi Akiva Feinstein, director of spiritual care at Montefiore in Beachwood, and Dr. Beth McLaughlin, chief medical officer at Hospice of the Western Reserve in Cleveland, creating a plan for advanced and palliative care makes decisions easier.
Advance directives: How to talk with patients about them
Published in AMA Wire
A patient’s comfort in contemplating, completing or even discussing an advance directive can greatly depend on what the physician has to say and offer.
It is often an awkward situation, in large part because many patients only see the advance-directives process in terms of suffering and death. That does not have to be the case.
“When physicians approach advance-care planning from the aspect of living well and quality of life, then patients feel reassured and then they want to engage with you and tell you what matters most,” according to internist VJ Periyakoil, MD, director of palliative care education and training at Stanford University School of Medicine.
Dr. Periyakoil wrote the “Planning for End-of-Life Decisions with Your Patients,” online physician education module.
The module is part of the AMA STEPS Forward™ collection of more than 50 practice-improvement education modules. It is part of the AMA’s strong support of advance directives and the help it provides to physicians on end-of-life matters, including guidance from the AMA Code of Medical Ethics.
Medicare also has helped spur interest in advance directives, with payment starting in 2016 for every patient to have a voluntary consultation on the matter with a physician or qualified health care professional. This benefit has been widely used, with about 14,000 providers billing almost $35 million in the first year.
A recent review of 150 studies of advance directives found more than a third of Americans have them, in some form or another. That leaves a large majority—many with the most immediate need for advance directives—without written instructions that will protect their intentions or provide for trusted family or friends to make care decisions if they are unable.
A focus on what matters most
The CME credit-eligible module from the AMA is based on the Stanford University Department of Medicine’s Letter Project. The module’s central, downloadable element is a three-page letter template that in plain language guides the patient through expressing life values and goals, as well as care instructions such as palliative sedation.
The letter template is available in eight languages and written at a fifth-grade reading level. Patients can complete the letter by themselves or be aided by patient navigators or other clinicians. At Stanford, completed letters are scanned into the patient’s electronic medical record using a barcode.
Though not a formal advance directive or living will—those are governed on a state-by-state basis—the letter can be used as a worksheet to help patients express their wishes in simple language. A physician can include the letter in a patient’s medical record as patient-generated health data.
The module provides detailed advice about how to initiate the conversation. Dr. Periyakoil said her approach is to “normalize” the process by saying, “I ask this of all my patients.”
In that way, “patients don’t feel that they are singled out for this.” Her goal, she assures them, is “to provide you with the best possible care and to do that it really helps me to understand what matters most to you.”
The letter provides check boxes for standard end-of-life care questions and space for naming the individuals who can make medical decisions if the patient is unable, but starts and devotes most of its space for patient to write about what’s most important to in terms of what’s important in life:
- What matters most to me (examples: being at home, going to church, playing with my grandchildren).
- My important future life milestones (examples: my 30th wedding anniversary, my grandson’s graduation, birth of my granddaughter).
- This is how we prefer to handle bad news in my family (examples: we talk openly, we shield the children, we do not like to talk about it).
- This is how we make medical decisions in our family (examples: I make the decision myself, my entire family has to agree on major decisions, my daughter who is a nurse makes the decisions).
- Other information about my values or end-of-life wishes I want you to know about.
“The physician can then move in confidence with clinical care that is in sync at all times with what the patient wants. Physicians often give medical advice or make care plans in a vacuum, “and we know very little about the patient as a person,” said Dr. Periyakoil.
“It is incredibly important to know everything there is to know about the disease,” she added. “It is equally important to know about the patient’s life goals and values, so that the care we provide is guided by what matters most to the patient. .”
AMA’s STEPS Forward is an open-access platform featuring more than 50 modules that offer actionable, expert-driven strategies and insights supported by practical resources and tools.
Based on best practices from the field, STEPS Forward modules empower practices to identify areas or opportunities for improvement, set meaningful and achievable goals, and implement transformative changes designed to increase operational efficiencies, elevate clinical team engagement, and improve patient care.
Several modules have been developed from the generous grant funding of the federal Transforming Clinical Practices Initiative (TCPI), an effort designed to help clinicians achieve large-scale health transformation through TCPI’s Practice Transformation Networks.
The AMA, in collaboration with TCPI, is providing technical assistance and peer-level support by way of STEPS Forward resources to enrolled practices. The AMA is also engaging the national physician community in health care transformation through network projects, change packages, success stories and training modules.
Study Encourages Having a Bucket List Talk
Talking to Doctors About Your Bucket List Could Help Advance Care Planning
February 8, 2018 by Stanford University Medical Center
For physicians, asking patients about their bucket lists, or whether they have one, can encourage discussion about making their medical care fit their life plans, according to a study by researchers at the Stanford University School of Medicine.
A bucket list is a list of things you’d like to do before you die, like visiting Paris or running a marathon. It’s a chance to think about the future and put lifelong dreams or long-term goals down on a piece of paper.
For doctors, knowing their patients‘ bucket lists is a great way to provide personalized care and get them to adopt healthy behaviors, said VJ Periyakoil, MD, clinical associate professor of medicine, who said she that she routinely asks her patients if they have a bucket list.
“Telling a patient not to eat sugar because it’s bad for them doesn’t work nearly as well as saying, for example, if you are careful now, you will be able to splurge on a slice of wedding cake in a few months when your son gets married,” Periyakoil said.
The study will be published Feb. 8 in the Journal of Palliative Medicine. Periyakoil, an expert in geriatrics and palliative care, is lead author.
The researchers, who surveyed 3,056 participants across the United States, found that by far the majority of respondents—91 percent—had made a bucket list. Survey results also showed that respondents who reported that faith and spirituality were important to them were more likely to have made a bucket list. The older the respondents were, the more likely they were to have a bucket list, and, not surprisingly, those younger than 26 tended to include more “crazy things” on their lists, such as skydiving.
Bucket list categories
Six general themes tended to describe the items on respondents’ bucket lists: 79 percent included travel; 78 percent included accomplishing a personal goal, such as running a marathon; 51 percent included achieving a life milestone, such as a 50th wedding anniversary; 16.7 percent included spending quality time with friends and family; 24 percent included achieving financial stability; and 15 percent included a daring activity.
“When you just Google the term ‘bucket list,’ it’s huge how much interest there is in this,” Periyakoil said. “It provides a very nice framework for thinking about your life goals, health and your mortality.”
Past research has found that when doctors talk to patients—especially those with chronic or terminal illnesses—about the patients’ goals for future care, it can be a vital part of the advance-care planning process. But it’s often awkward to have these conversations, particularly when they are about the end of life, the study said.
“If a patient wants to attend a beloved grandchild’s wedding or travel to a favored destination, treatments that could potentially prevent her from doing so should not be instituted without ensuring her understanding of the life impact of such treatments,” the study said.
Discussing a patient’s bucket list is just a good way to start these conversations, Periyakoil said. Most people are far more open to talking about their life’s goals in this context before filling out an advance directive, a written statement of a person’s wishes regarding medical treatment at the end of life, Periyakoil said.
‘Find out what actually motivates them’
“It’s important for physicians to talk to patients and find out what actually motivates them,” she said. She encourages both doctors and patients to bring up the topic of a bucket list. By discussing how a treatment or surgery might affect the patient’s life, and then discussing what the patient’s goals are, the best possible care plan can be laid out, she said.
“I had a patient with gall bladder cancer,” Periyakoil said. “He was really stressed because he wanted to take his family to Hawaii but had treatment scheduled. He didn’t know he could postpone his treatment by two weeks. When doctors make recommendations, patients often take it as gospel.”
After an informed discussion about his options and the side effects of the cancer treatments, he and his physician decided to postpone the treatment. He made the trip to Hawaii with his family, then returned to start cancer treatments, the study said.
“Patients don’t see the relevance of an advance directive,” said Periyakoil. “They do see the relevance of a bucket list as a way to help them plan ahead for what matters most in their lives.”
Explore further: Most physicians would forgo aggressive treatment for themselves at the end of life
More information: Vyjeyanthi S. Periyakoil et al, Common Items on a Bucket List, Journal of Palliative Medicine (2018). DOI: 10.1089/jpm.2017.0512
Journal reference: Journal of Palliative Medicine
Are Baby Boomers Changing the Way We Die?
Quality of life. Hope. Living before leaving.
The nature of death and dying has evolved dramatically over the past century, driven in great part by Baby Boomers.
“A Good Death: How Boomers Will Change the World a Final Time” asserts that many in this generation are embracing the idea that quality of life should be the most important issue for patients and families facing terminal illness.
Think You’ve Covered the Bases? Better Check Again.
Tom Brokaw felt confident that he was prepared until this TED Talk. Here his doctor daughter interviews the NBC journalist about his future health care wishes.
Get Started (Hint: You Don’t Have to Be a Boomer)
Call 713-677-7118 or email to request an Advance Planning Packet filled with information about how to write a Life Review, how to talk to your family, and necessary legal forms such as Medical Power of Attorney and Texas Directive to Physicians and Family or Surrogates. You may also download Advance Directive forms here.
—Karla Goolsby, Houston Hospice Communication Specialist
Helping an Aging Family Member Plan for the Future
Take Control While You Can
The importance of advance planning for aging adults (especially those suffering from chronic illnesses) cannot be overstated. Without the right legal and financial documentation, caregivers and their loved ones could be faced with a host of problems in an emergency. Doctors may refuse to discuss important medical information with a caregiver, a dying elder may not get the end-of-life care they desire, and control over an incapacitated loved one’s bank accounts and property could be given to a complete stranger.
6 Must-Have Legal Documents for Family Caregivers
You can help a loved one plan for their current and future medical and financial needs by working with them to prepare six essential legal documents, described in further detail below:
Important documents for managing medical care
- HIPAA Authorization: The Health Information Portability and Accountability Act (HIPAA) aims to protect medical record privacy. This law prevents doctors and other medical professionals from discussing an individual’s health information with anyone but that person. Even caregivers can’t to access an elderly loved one’s medical records, or talk to their doctor, until they sign a HIPAA form. Fortunately, this document is easy to obtain; most doctor’s offices have extra copies on hand.
- Healthcare Power of Attorney (POA): This document allows an individual to grant legal authority to a trusted relative (i.e. the family caregiver), or friend, to make healthcare decisions on their behalf. A person with healthcare POA can determine (among other things) where an elder lives, what they eat, who bathes them, and what medical care they receive. (*see note below)
- Advance Healthcare Directive: An advance healthcare directive combines a healthcare POA with a living will. A living will outlines how an individual wishes their end-of-life care to be managed (i.e. aggressive medical care versus hospice care), and may also include a Do Not Resuscitate (DNR) order, or instruction not to insert a feeding tube if they become incapable of eating on their own. Learn how to Avoid the Number One Mistake Elders Make With Healthcare Directives.
Important documents for managing finances
- Financial Power of Attorney (POA): A financial POA gives a trusted family member, or friend, the ability to make legally-binding decisions about a person’s financial assets. An individual with financial POA has the authority to manage their loved one’s finances, which may include paying bills, liquidating assets to cover expenses, or making other investment decisions. (*see note below)
- Trust: Trusts—essential estate planning documents that specify how a person wishes certain assets to be disbursed—come in several different varieties. Each type of trust has its own rules and requirements that affect how funds will be distributed after a loved one passes away. The main difference between a will and a trust is that a trust can be enacted while a person is still alive, or after they have died. A will only goes into effect after an individual has passed on.
- Will: There are many different kinds of wills, each with different stipulations regarding how assets and property are to be doled out after a person dies. As previously mentioned, a will can only be activated by the death of the individual. For more information on writing wills, see What is a Will and Why Every Senior Should Have One.
An elder law attorney can assist with the preparation of these documents; as well as valuable guidance for taking into account your loved one’s 
individual situation and preferences when planning for the future.
Don’t Wait for Disaster to Strike
Getting the necessary documents in order before a medical or financial disaster strikes can make an extremely difficult situation just a bit easier to navigate. Knowing that you’re carrying out your loved one’s wishes, even though they may not be able to voice them, can ease the crushing feelings of guilt and doubt than caregivers often experience in these situations.
*An additional note about POA: There can be confusion with regards to the difference between “durable” and “nondurable” powers of attorney. A durable POA is one that endures a person’s incapacitation, meaning that, until a person either passes away, or is able to regain control of their own affair, the POA remains in effect. This is as opposed to a nondurable POA, which becomes null upon a pre-defined contingency—such as a particular date, or in the event of a person’s incapacitation. For additional information on POA, see: Things You Can and Can’t Do With POA.
Provided courtesy of AgingCare.com, the go-to destination for family caregivers. AgingCare.com provides resources and guidance through financial and legal concerns, such as guardianship of elderly parents. This article is one of a series of articles included in the eBook, Family Caring for Family. Download your free copy at www.AgingCare.com/ebook.