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
During a recent volunteer shift, Sylvia Valverde was summoned to the dining room of Houston Hospice. Her initial confusion at seeing a cake, flowers and balloons turned to stunned surprise. The celebration was in her honor because she had been named Houston Hospice Volunteer of the Year. When she retired from a 33-year career as an educator, Sylvia knew volunteering with hospice was what she wanted to do. A very personal experience prompted her to seek opportunities to help others through Houston Hospice.
Unexpected Blessings of Volunteering
Sylvia says her biggest surprise about volunteering at Houston Hospice is how much she loves it. “The patients have given me tremendous insight about living life to the fullest and that the dying process is not to be feared. I’ve especially been blessed to give babies and toddlers love and care in their final days when their parents haven’t been able to be present. That has been my most rewarding experience.”
Because she is bilingual, speaking English and Spanish, Sylvia often translates for patients and families. She enjoys her conversations and says seeing patients and loved ones smile is priceless. “I enjoy visiting with the patients and family members and they like knowing that Houston Hospice is very special to me because my mother was a patient there. That experience connects us and lets them know that I have personally experienced hospice care. While every death is different, I can somehow relate and understand what they’re going through.”
Her mother’s experience is what inspired Sylvia to volunteer. She says the care her mother received in 2003 made a big impression on her. “I always said I wanted to give back when I had the opportunity. I retired from education in August 2011, and I immediately contacted Houston Hospice and began the training that September. God has blessed my life tremendously and He calls us to be servants—this is why I’m here—to serve.”
Volunteer Manager, Patsy Piner said it wouldn’t be Friday mornings without Sylvia Valverde’s lovely smile and sweet spirit. “Whether she is passing out pillowcases to patients, training new volunteers or sharing her delicious homemade goodies, she is a blessing to everyone she visits. We are so fortunate that she chose to volunteer with us.”
It Takes a Village of Volunteers and Staff
Volunteers are an integral part of nonprofit Houston Hospice’s team. To learn more about volunteering at Houston Hospice, call 713-467-7423 or visit www.houstonhospice.org.
—Karla Goolsby, Houston Hospice Communication Specialist
According to Albom We’re All Connected
Mitch Albom, best-selling author, journalist and broadcaster will make a rare Houston appearance to speak at the Houston Hospice 15th Annual Butterfly Luncheon on Tuesday, March 29, 2016. With the humor, insight and compassion that made his first novel, Tuesdays with Morrie, a runaway best-seller, Albom, will talk about the connectedness that serendipitously results from the seemingly random path of life’s journey. This is a major theme of his latest book, The Magic Strings of Frankie Presto, in which he notes that we’re all in a band, in fact several bands of people and groups throughout our lifetime. This book entices us to examine what part we’re playing in each of those “bands”.
A Funny Thing Happened on the Road to Being a Rock Star
An aspiring musician, Albom played in bands throughout his adolescence and worked as a performer after college. When he took an interest in journalism in his early 20’s Albom returned to graduate school, earning a Master’s degree in Journalism, followed by an MBA. He turned full-time to his writing, eventually moving to Detroit, where he became a nationally-acclaimed sports journalist at the Detroit Free Press. His first book, Tuesdays with Morrie is the chronicle of time spent with his beloved professor. Albom wrote the book to help pay Morrie’s medical bills, and to his great surprise it spent four years on the New York Times Bestseller list. A succession of best sellers followed including, The Five People You Meet in Heaven, For One More Day, Have a Little Faith, The Time Keeper and The First Phone Call from Heaven. In his latest book, The Magic Strings of Frankie Presto, Albom has merged his love of music and writing with his virtuoso main character’s Forest Gump-like romp through the music world.
The community is invited to attend the Butterfly Luncheon and hear Mitch Albom on Tuesday, March 29, 2016 at the Houstonian Hotel located at 111 North Post Oak Lane, Houston, Texas 77024. Registration begins at 11 a.m. Individual tickets and table reservations are available at www.houstonhospice.org or by calling 713-467-7423. Copies of The Magic Strings of Frankie Presto will be available for purchase and signing.
Proceeds from the luncheon fund Houston Hospice operations and its Butterfly Program of pediatric hospice care. The Butterfly Program was developed in 1996 to meet the needs of children with life-limiting conditions. Through this program, a team of physicians, nurses, social workers, chaplains, hospice aides and volunteers with expertise in children’s care are devoted to caring for children and their families.
—Karla Goolsby, Houston Hospice Communication Specialist
Grief is never more acutely felt than during the holidays, when there is an empty place at the table. As part of its nonprofit outreach, Houston Hospice offers complementary bereavement support to the community. During their pre-holiday workshops, Houston Hospice grief counselors, Marti Nelson and Tammy Zwahr, help the bereaved navigate the minefield of feelings and expectations they’ll encounter with these helpful tips:
HOW WILL I GET THROUGH THE HOLIDAYS?
10 tips for those who are grieving:
- Accept the likelihood of your pain. The energy you would spend evading what is going on around you will be more creatively spend adapting to the reality of what this particular season holds for you.
- Feel whatever it is you feel. Recognize the fact that something very important has happened in your life which causes reactions within you. Some of the feelings bereaved people feel include: sadness, depression, anxiety, fear, anger, guilt, and apathy.
- Express your emotions. The best means of expression is simple: be yourself. Choose people who will listen and respond thoughtfully. Journaling helps get feelings off your chest, clarifies thinking, and monitors your progress. Use music, pray, dance, or create.
- Plan ahead. Give yourself permission to change plans as you go. Talk things over with people whom you usually share the holidays.
- Take charge where you can. Evaluate holiday traditions. Some changes may be healthy and important to make. Eat healthfully and drink wisely. Maintain an exercise program or begin one. Get the rest you need.
- Turn to others for support. Let others know what you think will help you.
- Be gentle with yourself. Allow yourself time to rest. Avoid over committing yourself. Pace yourself on good days and give yourself lots of latitude on “bad” days and accept that grieving people have their share of these days.
- Remember to remember. You may have a special linking object which you might carry, wear, use, or place in easy sight. Create small remembrance area at home. Look at photos and talk to others about your life together. Remember the deceased in prayer, with a toast, or by lighting a candle at mealtime. Plant a tree or donate to a favorite charity.
- Search out and count your blessings. Stay in the present as much as possible. Savor what there is to savor. Cry and then let the tears pass and see what else you feel. Don’t be afraid to laugh.
- Do something for others. You can reach out and offer something of what you have and who you are, even if it feels like it’s only a little. Baby sit, cook a meal, or check on shut-ins. You can drive, shovel, telephone, mow, clean, trim, deliver, type, greet, etc. depending on your interests and abilities.
*EMOTIONAL WISH LIST
What would the holidays be like if I could have these wishes granted?
- That I could be alone when I choose, or be with others when I want to be…
- That other people would know without asking or guessing when I want to talk about my feelings or my loved one and when I want to remain silent…
- That others would know how to show their concern for me and my situation without being uneasy or awkward or embarrassed for them or me…
- That they could accept me, my tears, my anger, without criticizing or judging me…
- That people would not assume their estimate of when I should be “over it” is the correct one…
- That others would not try to tell me what is best for me…
- That the holiday season would disappear like the magician’s coin trick and reappear only when I am ready for it…
*Adapted from: “Tis The Season to be Jolly?”. Dr. William Alexy. Bereavement Magazine, November/December 1989. Reprinted with permission of Bereavement Publishing, Inc. (713-282-1948).
1 in 4 of All deaths in the U.S. are Veterans
Many Americans do not realize that 1 in 4 of all deaths in the U.S. are Veterans. As the nation honors these American heroes for their military service on Veterans Day, November 11, it’s important to remember that they also deserve recognition and compassionate care when dealing with a serious illness.
As a We Honor Veterans participant, Houston Hospice is providing specialized care to Veterans who are facing a life-limiting illness. The National Hospice and Palliative Care Organization (NHPCO) in collaboration with the Department of Veterans Affairs created We Honor Veterans to empower hospice and other healthcare providers across America to meet the unique needs of seriously ill Veterans and their families.
We’re Intentional About Caring for the Unique Needs of Our Veterans
“Through We Honor Veterans we are taking a giant step forward in helping healthcare professionals and volunteers understand and serve Veterans at the end of life,” said J. Donald Schumacher, NHPCO president and CEO. “It is time that we step up and acquire the necessary skills and fulfill our mission to serve these men and women with the dignity they deserve.” Houston Hospice CEO, Jim Faucett, noted the benefits of the program to patients and families and the organization, “As we’ve trained to meet the unique needs veterans face at the end of life, our staff has become more aware of all veterans. We’ve been enriched by seeking out our veteran volunteers and learning their stories, and we’re less hesitant to introduce ourselves to other veterans and thank them for their service.”
Within the We Honor Veterans program, there are four levels of distinction that hospices can earn based on their involvement with Veteran education and their interaction with the Veterans and their family members that they are caring for. The goal of these levels is to ensure the very best care is being provided to those who have served our country. Houston Hospice is working toward the highest level of participation. It is meeting the specific needs of Veterans by being knowledgeable about the wars in which they served and the associated traumas; such as radiation exposure from atmospheric nuclear weapons tests after World War II, and pulmonary maladies resulting from the oil rig fires of the Gulf War. Houston Hospice is also strengthening its relationship with the Michael E. DeBakey VA Medical Center and offering community outreach educational programs for Veterans’ groups about advance care planning, available resources, and care options.
Houston Hospice volunteer, Mike McCardle, began visiting veteran patients 15 years ago. Because he’s a veteran, he said patients open up to him about their lives and the emotional burdens they’ve carried since battle. “I walk in, give my military pedigree, then they give me theirs and we’re off and running. They know they don’t have to explain. They know I understand.” Mike served in Vietnam from 1964-69. He went to war as a young private and left Southeast Asia just five years later as a battle-seasoned Captain in the United States Army. Often, the wives of the veterans he visits have not even heard the stories their husband’s share with him. “The biggest surprise is how much I get out of it. I form a bond with these guys. I’ve met some real characters. I’ve heard about the Battle of the Bulge, and lots of stories about the South Pacific. I was just mastering my own PTSD and these guys really helped me to know that what I was going through is normal.”
As we celebrate our nation’s heroes this Veterans Day – and every day of the year – we must not forget that it is never too late to give them a hero’s welcome home. Learn more at www.WeHonorVeterans.org.
—Karla Goolsby, Houston Hospice Communication Specialist
Interfaith Blessing of Hands
Houston Hospice Cockrell Chapel
1905 Holcombe Blvd., Houston, Texas 77030
Wednesday October 28, 12 p.m. and 3 p.m.
A Tradition in Many Cultures
Blessing of Hands is a tradition among many cultures and religions as well as in many medical institutions. The Texas Medical Center’s Houston Hospice believes this voluntary, nondenominational act recognizes and unites health care employees, volunteers and caregivers who have chosen the shared journey of caring for patients, directly and non-directly. Blessing of Hands is a spiritual exercise and prayer to honor those who give of themselves each day. Affirming their work through this blessing is meant to strengthen and renew their efforts.
Services are for all Texas Medical Center staff, volunteers and caregivers and last about 15 minutes. For more information about Blessing of the Hands services, contact Chaplain Gordon Robertson at 713-677- 7220.
—Karla Goolsby, Houston Hospice Communication Specialist
First Instrument Of Its Kind To Explicitly Refer To Palliative Care
The resolution that older persons should enjoy all existing human rights and fundamental freedoms on an equal basis, couldn’t be timelier. For years, international conventions have protected the rights of children, women, and people with disabilities—groups recognized as vulnerable to marginalization and human rights violations. Yet the rights of older persons, who are susceptible to the same violations, have been woefully neglected in the human rights framework. Finally, there’s a sign that this is beginning to change.
In late June, the Organization of American States released a resolution in which member countries adopted the Inter-American Convention on the Human Rights of Older Persons. It was immediately signed by Argentina, Brazil, Chile, Costa Rica, and Uruguay, and completed in record time, with drafting efforts initiated in 2012 and final text approved in 2015.
The convention recognizes that older persons should enjoy all existing human rights and fundamental freedoms on an equal basis, and is based on general principles including dignity, independence, proactivity, autonomy, and full and productive integration into society.
The resolution couldn’t be timelier. Advances in science, technology, and medicine have helped make the older population one of the most rapidly growing age groups in the world. Yet older persons are often denied access to health, social benefits, work, food, and housing. They bear a disproportionately large burden of chronic, life-limiting, and incurable illnesses, and they often experience severe, debilitating pain.
This is the first instrument of its kind to explicitly refer to palliative care. It requires countries to provide access to palliative care without discrimination, to prevent unnecessary suffering and futile procedures, and to appropriately manage problems related to the fear of death. It also mandates that countries establish procedures to enable older persons to indicate in advance their will and instructions with regard to health care interventions.
the active, comprehensive, and interdisciplinary care and treatment of patients whose illness is not responding to curative treatment or who are suffering avoidable pain, in order to improve their quality of life until the last day of their lives. Central to palliative care is control of pain, of other symptoms, and of the social, psychological, and spiritual problems of the older person. It includes the patient, their environment, and their family. It affirms life and considers death a normal process, neither hastening nor delaying it.
The Resolution Is Not Without Its Flaws
The resolution is not without its flaws, however. For instance, it does not address important legal aspects of palliative care, such as concerns related to inheritance laws and the future of the patient’s property, access to social benefits, patient confidentiality, and the care of children and grandchildren. These legal concerns are closely tied to emotional distress during end-of-life care, and addressing them is part of palliative care’s holistic approach.
The Inter-American Convention established a follow-up mechanism to monitor progress in implementing its provisions. Countries must submit periodic reports to a committee of experts, and people or NGOs may submit petitions concerning any violation of the convention’s provisions.
The convention will enter into force as soon as two signatory countries ratify it, which is expected to happen soon. Once it does, human rights advocates in Latin America will finally be able to rely on a legally binding instrument to demand accountability for the failure to respect older persons’ rights.
There’s More Work To Do
But the effects of the convention could reverberate even further, helping to interpret the human rights of older people elsewhere in the world. For example, it comes at a critical moment to influence the African Regional Human Rights System, which is currently in the process of considering a draft Protocol on the Rights of Older Persons in Africa. And it strengthens civil society’s long-standing call for a UN convention on older persons, which was repeatedly raised during this year’s sixth session of the UN Open-Ended Working Group on Ageing.
We hope that the Inter-American Convention can set an important precedent for the drafting of other human rights instruments that include the right to palliative care. From the right to decide about end-of-life care, to relief from unnecessary suffering, to the need for adequately trained health professionals, palliative care is a human right the world must come to recognize.
From: Open Society Foundations
Houston Hospice nurses Reagan Denmon and Karen Hoover received the Bronze Excellence in Nursing Award, and Paige Prokop received the Silver Excellence in Nursing award from the Good Samaritan Foundation at a luncheon ceremony on September 1, 2015 at Houston’s Royal Sonesta Hotel. The event was chaired by Craig Cordola, President of the Central/West Region for Memorial Hermann Health System.
Reagan Denmon began her medical career as a Nuclear Medicine Technologist (NMTCB) and certified PET tech (Positron Emission Tomography). Her work with oncology patients created a desire to serve in palliative care. Reagan pursued a BSN at UT School of Nursing, finishing Summa Cum Laude and gained clinical experience at St. Luke’s in the Texas Medical Center as a renal telemetry nurse before joining Houston Hospice as an RN Case Manager in 2013. Since then she earned the Certified Hospice and Palliative Nurse credential (CHPN) in 2015. Reagan was nominated by Clinical Services Patient Care Manager, Jeff Boynton, who praised her saying, “Reagan is a true hospice case manager, and she is able to be proactive in her patients’ care, anticipating their needs and the needs of their families. She always gets high praise from her patients and families and has a can-do attitude.”
Karen Hoover was nominated by Houston Hospice Education Coordinator, Hope Cook, who wrote about Karen’s leadership and commitment to excellence saying, “Karen has been a strong leader on her team. She has promoted a culture of cooperation and concern among the nurses. She works to provide excellent care and this is contagious. She has served as a mentor for many staff members and nursing students. Her positive attitude and hard work to ensure all patients get the care that they need is exceptional.”
Paige Prokop was nominated by her Clinical Services Patient Care Manager, Dianne Gilbert, who wrote, “Paige is a wonderful nurse and human being. She is always thinking outside the box and looking for ways to help others – patients, families and colleagues. Paige is constantly thanked by patients’ families for her kindness and caring. She helps her colleagues by sharing her ideas and thoughts on the challenges we all face as hospice nurses. She is a mentor for our new nurses, and their patients and families benefit from this guidance. Paige is always trying to learn more and encourages others to learn. She enjoys sharing her knowledge with others. Houston Hospice is very lucky to have Paige Prokop as one of their outstanding nurses.”
Taking Care of Yourself Includes Accessing Support
Grief may be experienced in response to physical losses, such as death, or in response to symbolic or social losses such as divorce or loss of a job. The grief experience can be affected by one’s history and support system. Taking care of yourself and accessing the support of friends and family can help you cope with your grief experience.
There is no right way to grieve. It is an individual process and a natural part of life. Life won’t be the same after a loss, but experiencing your grief will allow you to adjust to life after loss.
Grief lasts as long as it takes to adjust to the changes in your life after your loss. It can be for months, or even years. Grief has no timetable; thoughts, emotions, behaviors and other responses may come and go.
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.