Today on the Facebook page for Nurse Keith Coaching, I posted a question about listening that really got me thinking. Listening is a skill that all nurses need to develop and hone over the course of their career. But what does it really mean to listen well, and what if we think about listening metaphorically rather than literally?
Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts
Thursday, January 24, 2013
Sunday, February 03, 2008
Family Caregivers Are Speaking Up
I was fascinated today while listening to a recent health-related interview on NPR's Fresh Air with Terry Gross. The subject of the interview was Suzanne Mintz, author of the new book, A Family Caregiver Speaks Up, and co-founder and president of the National Family Caregivers Association.
Ms. Mintz is the wife and caregiver of her husband, a man living with Multiple Sclerosis since 1974. Over the course of the interview, she recounts harrowing tales of hospital discharges devoid of planning, of caregiver burnout, of turning to neighbors in emergent circumstances to assist with transfers and other activities of daily living. Ms. Mintz laments the American healthcare system's apparent blindness to the acuity of patients as they are discharged to home with woefully unprepared families and caregivers shouldering the burdens of increasingly complex care.
The subtitle of Mintz's book, "It Doesn't Have to Be This Hard", speaks to the fact that Mintz is a caregiver who cares about other caregivers, and has penned a book with the goal of providing resources and empowerment to those responsible for the care of loved ones living at home. Additionally, The National Family Caregivers Association appears to offer resources, connection, Pen Pal programs, advocacy, volunteers, workshops, trainings, and much more to the tens of millions of Americans who choose to care for their loved ones in this Herculean manner.
During the course of the interview, Mintz lamented the lack of seasoned professionals who can coordinate the care of chronically ill patients and provide support and resources to families. Having recently left my job with a Disability Care Coordination Organization (DCCO), I would like to know what experiences Ms. Mintz and her organization have had with DCCOs---if any---and how her organization and various DCCOs could partner with state and federal government to improve care management programs, and to increase access to such programs for families across the country.
Providing care for a chronically ill loved one at home is no small undertaking these days, and while sick family members were generally cared for at home throughout the early twentieth century, doing so in this current economic climate has become next to impossible for so many families. Hard evidence is available that the majority of home foreclosures and bankruptcies in this country are not caused by frivolous spending and credit card use on the part of homeowners. People in this country are losing their homes due to the high cost of healthcare and from losing their jobs and careers due to illness. Astronomical medical costs, a sour economy, a pharmaceutical industry run amok in the halls of Congress, and a healthcare system driven by profit and market forces have all contributed to untold suffering for patients and caregivers alike. It is a sad state of affairs, and heroic people like Mintz are working hard to assuage that suffering, one family at a time.
Ms. Mintz is the wife and caregiver of her husband, a man living with Multiple Sclerosis since 1974. Over the course of the interview, she recounts harrowing tales of hospital discharges devoid of planning, of caregiver burnout, of turning to neighbors in emergent circumstances to assist with transfers and other activities of daily living. Ms. Mintz laments the American healthcare system's apparent blindness to the acuity of patients as they are discharged to home with woefully unprepared families and caregivers shouldering the burdens of increasingly complex care.
The subtitle of Mintz's book, "It Doesn't Have to Be This Hard", speaks to the fact that Mintz is a caregiver who cares about other caregivers, and has penned a book with the goal of providing resources and empowerment to those responsible for the care of loved ones living at home. Additionally, The National Family Caregivers Association appears to offer resources, connection, Pen Pal programs, advocacy, volunteers, workshops, trainings, and much more to the tens of millions of Americans who choose to care for their loved ones in this Herculean manner.
During the course of the interview, Mintz lamented the lack of seasoned professionals who can coordinate the care of chronically ill patients and provide support and resources to families. Having recently left my job with a Disability Care Coordination Organization (DCCO), I would like to know what experiences Ms. Mintz and her organization have had with DCCOs---if any---and how her organization and various DCCOs could partner with state and federal government to improve care management programs, and to increase access to such programs for families across the country.
Providing care for a chronically ill loved one at home is no small undertaking these days, and while sick family members were generally cared for at home throughout the early twentieth century, doing so in this current economic climate has become next to impossible for so many families. Hard evidence is available that the majority of home foreclosures and bankruptcies in this country are not caused by frivolous spending and credit card use on the part of homeowners. People in this country are losing their homes due to the high cost of healthcare and from losing their jobs and careers due to illness. Astronomical medical costs, a sour economy, a pharmaceutical industry run amok in the halls of Congress, and a healthcare system driven by profit and market forces have all contributed to untold suffering for patients and caregivers alike. It is a sad state of affairs, and heroic people like Mintz are working hard to assuage that suffering, one family at a time.
Sunday, August 12, 2007
Caring for the Dying and the Self
When a loved one is in the (relatively slow) process of dying from a terminal illness, we can often lose ourselves in the minutiae of care-giving, ignoring our own needs vis-a-vis the grieving process. When someone is living at home and facing death with family at their side, those family members providing emotional and physical support can be consumed by the needs of the dying person, consequently being potentially cut off from their own feelings and the need to grieve and mourn an imminent loss.
Finessing the end of a life is a subtle emotional process for all involved. Elizabeth Kubler-Ross had very specific ideas about the "stages" of grieving and loss which radically changed the global conversation about death and dying. Stephen and Ondrea Levine also offer a unique spiritual perspective of this most intimate and ubiquitous human experience. Sogyal Rinpoche, often quoted on this blog, shares his own views of death and dying through his own spiritual lens in his seminal book, The Tibetan Book of Living and Dying, one chapter being entitled Heart Advice on Helping the Dying.
I have found myself lost in the pragmatics of supporting my parents as my step-father faces death from metastatic pancreatic cancer. With no treatment options remaining, home hospice care is now the key to comfort, symptom management, and emotional and spiritual support for my parents. In this way, I hope to make room for my own grieving which has been sidelined by the need for practical problem-solving and advocacy. Those needs will not disappear, but when one enlists the assistance of professionals who are highly skilled in this delicate process, one can begin to let one's guard down and open to the winds of grief.
I now welcome those winds to blow through me, allowing myself to begin the process of letting go even as constant presence and compassion is needed. For if the caregiver goes uncared for, the caregiver's ability to serve will only suffer. To paraphrase an ancient physician whose name is unknown to me: "Unshed tears will make other organs weep".
Finessing the end of a life is a subtle emotional process for all involved. Elizabeth Kubler-Ross had very specific ideas about the "stages" of grieving and loss which radically changed the global conversation about death and dying. Stephen and Ondrea Levine also offer a unique spiritual perspective of this most intimate and ubiquitous human experience. Sogyal Rinpoche, often quoted on this blog, shares his own views of death and dying through his own spiritual lens in his seminal book, The Tibetan Book of Living and Dying, one chapter being entitled Heart Advice on Helping the Dying.
I have found myself lost in the pragmatics of supporting my parents as my step-father faces death from metastatic pancreatic cancer. With no treatment options remaining, home hospice care is now the key to comfort, symptom management, and emotional and spiritual support for my parents. In this way, I hope to make room for my own grieving which has been sidelined by the need for practical problem-solving and advocacy. Those needs will not disappear, but when one enlists the assistance of professionals who are highly skilled in this delicate process, one can begin to let one's guard down and open to the winds of grief.
I now welcome those winds to blow through me, allowing myself to begin the process of letting go even as constant presence and compassion is needed. For if the caregiver goes uncared for, the caregiver's ability to serve will only suffer. To paraphrase an ancient physician whose name is unknown to me: "Unshed tears will make other organs weep".
Thursday, May 10, 2007
Schwartz Center Rounds
A new concept made its way into my personal and professional orbit today and I wanted to share it here. This concept is something called "Schwartz Center Rounds", which, according to the official website, is "a multidisciplinary forum where caregivers discuss difficult emotional and social issues that arise in caring for patients." The organization is doing some very interesting and thought-provoking work, and we are considering applying for a grant to bring Schwartz Center Rounds into our workplace, where the stress of our work takes its toll daily.
The Schwartz Center website explains further: "Over 26,000 clinicians across the country participate in these interactive discussions and share their experiences, thoughts and feelings on different topics. Schwartz Center Rounds take place at over 110 sites in 26 states."
Developed at Massachusetts General Hospital, the center appears to focus its energies on communication skills, end-of-life care, cultural competency, and spirituality. Aside from the Schwartz Center Rounds model, other programs include specialized training for medical, nursing, and allied health students, a speaker series, The Compassionate Caregiver Awards, and a Clinical Pastoral Education Program for Health Professionals.
Simply the notion that an organization exists with the sole aim of "strengthening the patient-caregiver relationship" buoys my spirit. That we, as a group of professionals, may be able to apply and receive grant money to strengthen our connections with patients and support ourselves in our work is truly a beacon of hope. In a team discussion, we decided that, whether we receive the grant or not, we have to make it our mission to bring this level of healing and self-awareness into our midst. The work that we do---caring for the sickest, poorest, and most disenfranchised inner-city communities---can truly exact a heavy price on clinicians and administrative staff alike, on both the physical and emotional levels. Despite the stress of our endeavor to provide such cutting-edge care, our attrition rate is extremely low, a testament to the closeness and camaraderie that we share as a team. Many of us frequently remark how this group of people works so well under incredible duress with such grace. Still, no amount of camaraderie can counteract the stress-related illnesses that can develop when deeper needs go unmet. I am a walking example, and my healing journey is still ongoing.
Gone are the old-fashioned days of the private-practice physician who tends to the needs of a small geographic area from birth to death, delivering babies and pronouncing the deaths of elders at home. Healthcare has become a behemoth of specialization, splintered care, multiple caregivers, complex treatments, and a financial climate which often flies in the face of the essence of caregiving. Managed care often ties clinicians' hands, and caring for patients is made all the more difficult as providers jump through flaming hoops of bureaucracy to obtain the optimal treatment for deserving and ailing patients. The explosion of obesity, addiction, mental illness, and multiple comorbidities further stresses the system and the caregivers, and dangerous communicable diseases have only increased patients' fears and providers' need for increasingly specialized knowledge. It's a complex medical world in the 21st century, and fears of litigation only serve to make providing care that much more stressful.
Given the current healthcare climate, the complexity of patients with multiple illnesses, and the demands on all of us working in the field, there have to be valves through which the pressure is released. Addiction, alcoholism, workaholism, and burnout certainly do release pressure, but the subsequent damage done by these practices is all too real. Schwartz Center Rounds and similar models of self-reflection and development may be just what the doctor ordered, but it's a medicine that will only work if we take it.
The Schwartz Center website explains further: "Over 26,000 clinicians across the country participate in these interactive discussions and share their experiences, thoughts and feelings on different topics. Schwartz Center Rounds take place at over 110 sites in 26 states."
Developed at Massachusetts General Hospital, the center appears to focus its energies on communication skills, end-of-life care, cultural competency, and spirituality. Aside from the Schwartz Center Rounds model, other programs include specialized training for medical, nursing, and allied health students, a speaker series, The Compassionate Caregiver Awards, and a Clinical Pastoral Education Program for Health Professionals.
Simply the notion that an organization exists with the sole aim of "strengthening the patient-caregiver relationship" buoys my spirit. That we, as a group of professionals, may be able to apply and receive grant money to strengthen our connections with patients and support ourselves in our work is truly a beacon of hope. In a team discussion, we decided that, whether we receive the grant or not, we have to make it our mission to bring this level of healing and self-awareness into our midst. The work that we do---caring for the sickest, poorest, and most disenfranchised inner-city communities---can truly exact a heavy price on clinicians and administrative staff alike, on both the physical and emotional levels. Despite the stress of our endeavor to provide such cutting-edge care, our attrition rate is extremely low, a testament to the closeness and camaraderie that we share as a team. Many of us frequently remark how this group of people works so well under incredible duress with such grace. Still, no amount of camaraderie can counteract the stress-related illnesses that can develop when deeper needs go unmet. I am a walking example, and my healing journey is still ongoing.
Gone are the old-fashioned days of the private-practice physician who tends to the needs of a small geographic area from birth to death, delivering babies and pronouncing the deaths of elders at home. Healthcare has become a behemoth of specialization, splintered care, multiple caregivers, complex treatments, and a financial climate which often flies in the face of the essence of caregiving. Managed care often ties clinicians' hands, and caring for patients is made all the more difficult as providers jump through flaming hoops of bureaucracy to obtain the optimal treatment for deserving and ailing patients. The explosion of obesity, addiction, mental illness, and multiple comorbidities further stresses the system and the caregivers, and dangerous communicable diseases have only increased patients' fears and providers' need for increasingly specialized knowledge. It's a complex medical world in the 21st century, and fears of litigation only serve to make providing care that much more stressful.
Given the current healthcare climate, the complexity of patients with multiple illnesses, and the demands on all of us working in the field, there have to be valves through which the pressure is released. Addiction, alcoholism, workaholism, and burnout certainly do release pressure, but the subsequent damage done by these practices is all too real. Schwartz Center Rounds and similar models of self-reflection and development may be just what the doctor ordered, but it's a medicine that will only work if we take it.
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