Advance Directive

Tara Graham: When the unexpected happens, what’s your plan?

Editor’s note: This commentary is by Tara Graham, MSW, LICSW, LNHA, who is executive director of the Hospice and Palliative Care Program of the VNA of Chittenden and Grand Isle Counties, Vermont’s oldest and largest non-profit home health and hospice agency.

It’s National Healthcare Decisions Week. Who’s Your Person? What’s Your Plan?

It’s a simple yet vitally important question all Vermonters over 18 should be able to answer. If you are unable to speak for yourself due to incapacitating illness or injury, who will speak for you? Who will ensure the treatment you receive – or decline – reflects your beliefs and preferences?

In my work as Executive Director of the Hospice and Palliative Care Program at the VNA of Chittenden and Grand Isle Counties, I engage with individuals and families facing life-limiting illness every day. Conversations about wishes, values and preferences at the end of life are a necessary part of the hospice philosophy of care. These conversations can be at once routine and profound. The process of dying is a daily part of my life and I realize that this is not true for most people – it isn’t even consistent among those closest to me personally.

For many, talking about debilitating illness or injury and death is completely foreign and something to be avoided. It’s uncomfortable, some may even say a little morbid. But here’s the thing: I believe it is a person’s innate right to choose the direction of their lives until the moment he or she dies, regardless of their ability to communicate their needs. We all hope to never have a serious car accident, but we purchase car insurance so we are prepared should the unexpected happen. Advance care planning – making your healthcare wishes known – is like an insurance policy against unwanted medical treatment and interventions during times of tremendous stress and uncertainty.

Despite recent gains in public awareness of the need for advance care planning, studies indicate the majority of Vermonters, and in fact most Americans, have not exercised their right to make decisions about their healthcare in the event they cannot speak for themselves. By normalizing conversations around advance care planning, and making our wishes known to loved ones and our healthcare providers, we can all be better prepared to deal with the unexpected.

I have had the privilege of hearing about people’s fears throughout my career as a social worker. Over and over again, the theme of losing capacity or loss of control is consistently at the top. Even my dad, when faced with a terminal diagnosis of glioblastoma, who knew intuitively when he no longer wanted to pursue curative treatment, so he could focus instead on quality of life for his remaining days, found himself having to explain his decision to family and friends. My dad was able to make his wishes known. Thankfully, he also had an advance directive in place in the event he became unable to speak for himself and my mother and sisters needed to make healthcare decisions for him. He gave us the gift of certainty.

Imagine if we could chart a path, lay out scenarios and share with those that love us about how to represent us at a time when we might not be able to represent ourselves? This is a very real, obtainable possibility.

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Advance Care Planning: Reminder for YOU to Have the Conversation

By Cozzie M. King, National Coalition for Hospice and Palliative Care

The scenario generally plays out the same. A person becomes ill…too ill to make decisions for themselves…too ill to communicate with the attending medical staff. Nearby family rush to the hospital bedside. The physician explains what’s happening to the family. Things aren’t looking good or the medical terminology is not easy to understand. After some time, the family is left to make decisions for their seriously ill loved one. Decisions that have not been discussed or thought about prior to this point. What do we do? Who has the final say? Things normally go downhill from here. You’ve seen it. I’ve seen it. Medical staff dread it. No one wins. Making healthcare decision at the hospital bedside is not the right time. These conversations need to happen before the crisis, not during.

Speak Up

As a mom, sister, daughter, past and future caregiver, I understand the importance of having conversations about my future healthcare decisions with my family and friends. These conversations can be hard to begin. However, there are many resources, tools and games that help families have these talks in creative ways. Over the years, I have facilitated several talks on how to plan and communicate your future healthcare decisions.  One of my personal favorite resources is the Speak Up video. This video is one of the tools I consistently use when explaining why it’s so important to have the conversation and complete an advance directive.  I encourage you to post and share this video with your family and friends on Facebook. They’ll thank you later. The message is short and simple.  Check it out:

Click to watch NHDD Speak Up Video

As we advocate for more families to participate in advance care planning, keep it simple. I remind my family and friends that advance care planning is much more than completing a form. It really is more about the conversations you have before and after any document is completed.

Lead By Example

April 16th is National Health Care Decisions Day (NHDD) and this year’s theme is, “It always seems too early, until it’s too late.” NHDD is a call to action for EVERYONE to:

→Think about your beliefs and values,
→Write them down,
→Choose a healthcare proxy (someone who speaks for you if you are not able),
→Complete an advance directive, and
→Share with your healthcare proxy, family and doctors.

The purpose of NHDD is to inspire, educate and empower the public and providers about the importance of advance care planning – and most importantly, to encourage people to express their wishes regarding healthcare and for providers and health care organizations to respect those wishes, whatever they may be. As someone in the health care field,  be sure to complete your advance directive and encourage your colleagues and loved ones to do the same. Practice what you preach. Read related story in TMC News

 

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The Other Side of the Conversation

Author: Christopher M. Thompson, MD, HMDC

This article originally was published in Winter 2017 NewsLine.

In this post, a physician connects his personal and professional caregiver roles.

As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.

My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.

So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.

I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.

I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”

All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.

Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.

Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?

Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.

As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.

Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.

I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do.

These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.

During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”

———–

Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
 

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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

 

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Resourceful Books

Communication in palliative care [reading list]

Palliative care is now a cemented service offered by health care services globally, and in the United Kingdom the hospice care sector provides support to 200,000 people each year. The care given to the terminally ill, as well as their family and friends is vital in supporting individuals through what is, for most, the most challenging time of their lives. This care ranges from clinical medical practice to spiritual support, and aims to put individuals in as much comfort as is possible. People often find it difficult to discuss death and the topic is still widely considered to be taboo. This is in direct conflict with the principles of palliative care, which encourages active and clear communication from all those involved in the process.

To convey the importance of communication in effective palliative care, and encourage an open dialogue on the subject of death and dying, we have collated a reading list on these topics below.

Communicating with children when a parent is dying” by Cynthia W. Moore and Paula K. Rauch from the Oxford Textbook Communication in Oncology and Palliative Care (2017)

This chapter provides suggestions for clinicians on supporting parents’ open communication with their children, drawing on the authors’ extensive clinical experience of providing parent guidance to patients.

Discontinuation of Life-Sustaining Therapies” by Kathy Plakovic from the Clinical Pocket Guide to Advance Practice Palliative Nursing (2017)

The authors outline how withholding and/or withdrawing life sustaining medicines are processes that fundamentally rest on the shared decision-making of carer, patient, and family.

Defining a ‘good’ death” by Karen E. Steinhauser and James A. Tulsk from the Oxford Textbook of Palliative Medicine 5th Edition (2015)

This chapter explores the reappearance within the last 40 years of the definition of a ‘good death’ in medical contexts, and what the clinical implications of using the terminology ‘good death’ may be for practitioners and patients alike.

The doctor’s room by Hush Naidoo. CC0 public domain via Unsplash.

Truth telling and consent by Linda L. Emanuel and Rebecca Johnson from the Oxford Textbook of Palliative Medicine 5th Edition (2015)

This chapter focuses on the role of truth-telling in therapeutic relationships and the ways in which effective communication can maintain hopes and deliver information sufficient for informed consent at the same time in palliative care.

Cicely Saunders and her early associates: A kaleidoscope of effects” by David Clark from To Comfort Always: A History of Palliative Medicine Since the Nineteenth Century (2016)

David Clark looks at the specific contributions made by Dr Cicely Saunders and her colleagues to modern palliative care.

Talking with patients” by Catherine Proot and Michael Yorke from Life to be Lived: Challenges and Choices for Patients and Carers in Life-threatening Illnesses (2014)

The authors discuss how talking with patients stands at the heart of the patient-carer relationship. This communication involves providing information, but also listening, as patients must feel that their concerns and feelings are understood.

Talking and Working with Dying Patient: True Grief and Loss” by Lisa Humphrey from The Oxford  Handbook of Ethics at the End of Life (2016)

A palliative care and hospice physician reflects on the lessons learnt about grief and dying over the course of her training and career.

Think adult—think child! Why should staff caring for dying adults ask what the death means for children in the family?” from the British Medical Bulletin

This article discusses the lack of awareness on the effect death has on children and how carers looking after ill parents should begin to consider the short and long term effects on children and offer appropriate support as part of their duty of care.

Featured image credit: Gress, park bench by Olesya Grichina. CC0 Public Domain via Unsplash.

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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

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Taking a Lesson from Muhammad Ali

muhammad-ali-punch_2856798k

The Champ Did it Right

I’m one of those adults who doesn’t have an up-to-date will or a signed Medical Power of Attorney. I know better, and now, I’m going to take a lesson from the Champ, Muhammad Ali. His funeral was ten years in the making. An Ali family spokesperson said the boxing legend, acclaimed civil rights icon, and humanitarian personally planned the details of his funeral over a ten-year period. Because I work at a hospice and my husband is a pastor, I’m frequently in the know about the end-of-life wishes of elder friends. Here’s the thing though, this task is not just for the elderly.

Ask Questions

Ask Yourself Basic Questions

While it may feel scary or overwhelming to think about our own deaths, asking yourself basic questions about how and where you’d want to die is a critical first step. Would you prefer to be at home? Do you envision attempts to keep you from dying with resuscitation and life support measures or do you prefer a natural death? These are not easy conversations to have with our loved ones. But they are necessary ones if we want to leave this world on our own terms and ease the burden loved ones will face when it’s our time to go.

According the National Hospice and Palliative Care Organization, the very people we expect to help guide us through these conversations are not well prepared. A recent national poll found that while almost all doctors think having end-of-life conversations with their patients are important, nearly half said they frequently or sometimes feel unsure of what to say and less than one-third reported having had any formal training specifically on talking with patients and their families about end-of-life care. Because our medical culture default is set up first to keep people alive at all costs. Conversations about how to die can be seen as going in opposition to that cultural norm.

Legal surrogate

So, What to do?

Identify a legal surrogate decision maker. This person is someone you trust to follow your wishes if ever you are unable to communicate. Any adult can serve as your surrogate regardless of whether they are related to you or not.

Additionally, complete a living will or advance directive. This shouldn’t replace conversations with loved ones or your legal surrogate. However, completing these will express your values and wishes around life support and serve as a guide for loved ones and your healthcare providers. Houston Hospice provides complimentary packets filled with hard copies of information about how to start this important conversation along with Texas Medical Power of Attorney and Texas Directive to Physicians and Family or Surrogates forms. (Email kgoolsby@houstonhospice.org or call 713-677-7118 to request a packet.)

Medical Power of Attorney

Knowledge is Power

Next, familiarize yourself with palliative and hospice care. Palliative medical care focuses on helping seriously ill patients and their families and provides and extra layer of support to address symptoms and the stress of being ill during any phase of treatment.

Hospice utilizes palliative care, plus it adds additional end-of-life medical, social, emotional and spiritual support for patients who have been diagnosed with a life-limiting illness and their families. Hospice care can be provided at home, in an assisted living community, or in an inpatient care setting. Most people do not want to die in a hospital. However, when ill, all roads lead to hospitalization and once in the hospital, many barriers can prevent a transition home. It’s important that loved ones and healthcare providers know your preference in advance.

Most of us won’t need to spend 10 years planning as Ali did. But we need to think carefully about our values and wishes and, most importantly, we need to share our wishes with loved ones.

—Karla Goolsby, Houston Hospice Communication Specialist

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Conversations Before The Crisis

Conversations Before The Crisis: National Healthcare Decisions Day April 16, 2016

The Most Important Conversation We’re Not Having

Mother and daughter portrait

How we want to receive care in the event of a medical crisis represents the most important and costly conversation that we are not having. Some families are so reluctant to discuss medical and end-of-life issues that loved ones die without having the opportunity to express their last wishes. And, physicians often are equally hesitant to discuss these issues. Houston Hospice is promoting National Healthcare Decisions Day (April 16, 2016) to inspire, educate and empower the public about the importance of advance care planning

Advance care planning involves making future healthcare decisions that include much more than deciding what care you would or would not want; it starts with expressing preferences, clarifying values, identifying health care preferences and selecting an agent to express healthcare decisions if you are unable to speak for yourself.

National Healthcare Decisions Day is a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and resources to communicate and document their future healthcare decisions.

Houston Hospice is offering free resources and consultations to help transform this seemingly difficult conversation into one of deep engagement, insight and empowerment.

Points To Consider:

 

Conversations Before the Crisis Dinner

Sharing your wishes can bring you closer to the people you love. Participate in National Healthcare Decision Day by filling your table with comfort food, family and friends and talking about your treatment preferences. Houston Hospice will give you the tools to host your “Conversations Before The Crisis Dinner”. Pick up your Healthcare Conversation Kit with resources such as Advance Medical Directives and Medical Power of Attorney documents and speak to one of our experts at Houston Hospice, 1905 Holcombe Blvd., Houston, Texas. Or download resources from www.houstonhospice.org.

Multi-generation family in park conversations

—Karla Goolsby, Houston Hospice Communication Specialist

 

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Helping an Aging Family Member Plan for the Future

MomAndDaughter

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

Important documents for managing finances

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 Familyindividual 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.

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