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.”
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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.
There is strong consensus that spirituality is an important aspect of care for patients and family caregivers facing serious illness or end of life.[1] Yet, even the most supported palliative care programs struggle with how to best provide spiritual care, given the large caseloads, limited staff, and challenges of the patient population’s ever-increasing diversity of religious and spiritual needs.[2]These issues have become even more significant as palliative care has shifted to the outpatient setting where there may be even fewer resources.
A recent pilot study[3] conducted among 31 patients with advanced cancer evaluated the feasibility and acceptability of chaplain-delivered spiritual care in an outpatient palliative care setting. The investigators used a well-established intervention known as the Spiritual Assessment and Intervention Model (Spiritual-AIM),[4] which is based on the idea that healing happens in relationships and that all humans have three core spiritual needs:
A need for meaning and direction;
A need to feel self-worth and belonging to community; and
A need to love and be loved, including seeking reconciliation for broken relationships when needed.
During three scheduled encounters, chaplains identified the patients’ unmet needs in these three areas and developed plans to meet those needs. In a pre-/post-test design, outcomes were assessed using well-studied tools that measured patient symptoms, spirituality, coping, dignity, depression, and anxiety. From before to after the intervention, increases were seen in several aspects of spiritual well-being, including the subscales for “faith” and “religious coping.”
Viewpoint
Spirituality is a key dimension of quality palliative care, yet palliative care programs need models of care to integrate spiritual care into standard practice. As with all domains of palliative care, there is also a need to generate evidence supporting clinical practice. This study makes an important contribution to the fields of palliative care and spiritual care by testing a model of outpatient spiritual care and including important patient-centered outcomes.
In their discussion, the study authors acknowledge that other variables might have influenced their findings and that some of the tools they used might be measuring psychosocial factors rather than strictly religious or spiritual ones. However, these overlapping constructs are related to purpose, meaning, comfort, and peace-all of which are associated with quality of life, regardless of the patient’s specific faith or belief system.
Chaplains are the spiritual care specialists within interdisciplinary teams, and their contributions, as well as outcomes of their work, have not been well supported or -studied. The Spiritual-AIM intervention has great potential to guide the training of other chaplains and to help achieve a higher level of care for patients and families.
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.
There’s an important medical term that you may not have heard of: Palliative Care. “Palliate” means to make comfortable by treating a person’s symptoms resulting from a serious illness. Hospice is one form of this care that many Americans have heard of. Palliative Care is much more comprehensive than many people realize.
1. It’s More Than Just Pain Relief
Palliative care focuses on helping a person be comfortable by addressing all symptoms that cause physical distress: pain, digestive issues, swelling, difficulty breathing, etc. Palliative care professionals are experts at managing all symptoms associated with serious illness. Additionally, this care addresses the spiritual and emotional needs of patients.
2. It’s Delivered By A Team
Hospice and other palliative care providers utilize teams consisting of doctors, nurses, nurses aides, social workers, counselors, chaplains, and trained volunteers, working together to provide, physical, emotional, social and spiritual care.
3. Palliative Care Includes The Patient’s Family
The goals of care are to improve the quality of a seriously ill person’s life and to support that person and their family (or support network) during and after treatment.
4. It’s Not Limited To Hospice
For more than thirty years, hospice programs have been providing palliative care for people at the end of life. Hospice serves more than 1.65 million patients and their family caregivers each year. Hospices are the largest providers of palliative care services in the county. However, this very same approach to care is being used by other healthcare providers, including teams in hospitals, nursing facilities and home health agencies in combination with other medical treatments to help people who are seriously ill.
5. It’s Available At Any Time During Illness
If it can help make life more enjoyable, why wait? Palliative care may be given at any time during a person’s illness, from diagnosis on. Under hospice palliative care, a patient focuses on comfort and quality of life. Under palliative care outside of hospice, a patient may continue with curative treatments.
Houston Hospice can help you understand more about palliative care and all the services offered by Houston Hospice. Contact our 24/7 help and information number at 713-468-2441.
Additional information on caregiving and advance care planning is available from the National Hospice and Palliative Care Organization’s Caring Connections at www.CaringInfo.org.
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 Convention Defines Palliative Care As:
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.
As our population ages, medical professionals are finding that cultural factors influence the decisions of the patients and their families as their illnesses progress. End of life care involves a time of
Dr. Hanh Trinh
medical, financial, and emotional changes for patients and their families. Patients can be referred to hospice when they are diagnosed with a terminal condition with a prognosis of 6 months or less. Hospice provides a team-oriented method of addressing not just physical pain, but also spiritual and emotional pain.
The cost of hospice care is covered entirely by Medicare and Medicaid for patients with these benefits. For those patients with private insurance, verifying benefits with the insurance company is important prior to signing on. The hospice team can provide services wherever the patient lives, whether that is in a home, an assisted living facility, or a nursing home. In the case that the patient has uncontrolled symptoms of pain, nausea, shortness of breath, or restlessness, hospice has inpatient facilities which may provide a higher level of care.
Having a hospice team to address their concerns and a 24-hour hospice nurse to call can provide families with the peace of mind that they are not alone, even in their most trying times. The hospice team can follow patients and families on their journey through illness; from the time their active treatments are no longer beneficial, to comforting moments enriched by hospice’s supportive care when patients can be among their loved ones. To learn more about hospice comfort care visit www.houstonhospice.org or call 713-467-7423 (713-HOSPICE).
Thuy Hanh Trinh, MD
Thuy Hanh Trinh, MD, MBA, FAAFP, FAAHPM, WCC, is an Associate Medical Director at Houston Hospice in Houston, Texas. She received her medical degree from Louisiana State University Health Science Center in New Orleans and trained in family medicine at Baylor College of Medicine. Following residency, she completed her geriatric fellowship at Baylor College of Medicine and her palliative medicine fellowship at M.D. Anderson Cancer Center. She joined Houston Hospice in 2007 and serves as the Education Liaison.
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.
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