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.
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.
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.
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.
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.
Rebecca Parker is a Marketing Executive based in the Oxford office of Oxford University Press.
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
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 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.
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.)
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
Conversations Before The Crisis: National Healthcare Decisions Day April 16, 2016
The Most Important Conversation We’re Not Having
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:
Patients have the right — and deserve plenty of time — to discuss their care preferences. It’s best to start those conversations early, long before the threat of serious illness.
You’re not too young to appoint a loved one to make your healthcare decisions when and if you are unable to make them yourself. That loved one has “medical power of attorney” and should follow your written directions.
How does the person who has “medical power of attorney” know what type of care you want or don’t want at the end of your life? Do you want heroic measures to save your life? In the case of terminal illness, do you want to receive care at home, surrounded by family and friends? Write it down.
The focus of hospice care is pain and symptom management rather than aggressive curative measures. Nevertheless, hospice provides more medical care not less to insure patients are comfortable and able to enjoy their lives as long as possible.
One reason it is so difficult to talk about serious illness and hospice, is that families think it will destroy the patient’s hopes of surviving. Healthcare planning empowers the patient.
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.
—Karla Goolsby, Houston Hospice Communication Specialist
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.
Founded in 1980, Houston Hospice has evolved from an alternative grass roots concept to a leader in hospice care for people of all ages and all walks of life.
Houston's oldest, largest, independent hospice, we are proud to be a 501 (c) (3) organization that is community-based, community-supported and not for profit. This independence allows us to react quickly to community needs and incorporate new innovations in hospice care.
Thanks to the generous, unwavering support of our corporate and private sponsors, we continue to serve Texans from all socio-economic groups irrespective of a person's ethnicity, beliefs or ability to pay.
