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Being diagnosed with a life-limiting or terminal illness is devastating for both the patient and their loved ones. Navigating the many options for care can be a frustrating and confusing task. Expert Gary Buckholz, MD, with San Diego Hospice and The Institute for Palliative Medicine, joins our host, David Granet, MD, to discuss both palliative care and hospice and how these services help people by addressing their physical, emotional and spiritual needs. Series: Health Matters [6/2010] [Health and Medicine] [Show ID: 17814]
Become a hospice volunteer. Learn about hospice and the special philosophy of care that allows you to face death by really living.
Family members of patients in the advance planning intervention reported significantly less emotional trauma afterward, Karen M. Detering, MBBS MHlth Ethics, of Austin Health in Heidelberg, Victoria, Australia, and colleagues reported online in the BMJ.
The discussion about end of life care options are not just about the patient – it’s also about the family.
Author: Daniel Butler
Yankee hospice service started with the Connecticut Hospice in March 1974. Today, there are over 2,884 Medicare-certified hospices, and an extra 200 volunteer hospices within the U.S., with as several as 1.5 million Americans seeking hospice treatment in recent years. As a program designed to facilitate palliative take care of terminally sick patients and their families, several people marvel, what then is that the difference between hospice and palliative care, or are they one in the identical? Whereas palliative care addresses patients with life-threatening illnesses, anyone, regardless of life expectancy, will receive this kind of care. Hospice, meanwhile, provides for patients who will not profit from regular medical treatment, per a doctor\’s determination, and are in the last stages of a terminal illness. Hospice and palliative care share the philosophy of maintaining and managing the patient\’s quality of life. Palliative care programs generally address the physical, psychosocial, and religious wants and expectations of a patient with a life-threatening illness, at any time during that illness, whether or not life expectancy extends to years. Palliative care will not preclude aggressive treatment of an illness, and provides comfort to patients and their loved ones. Patients receive palliative care from a team of doctors, nurses, social staff and clergy in their home or a hospital, however also in nursing or assisted living facilities. Hospitals, hospices, skilled nursing facilities and health care clinics offer these services, that may include a monthly visit to a doctor, or weekly home visits from a social employee or nurse to help manage pain and symptoms. The goal of hospice care is to keep pain and suffering of an individual with a terminal diagnosis to a minimum, and not to cure the illness. Provided in the patient\’s home or in hospice centers, hospitals, skilled nursing homes and alternative long-term care facilities, hospice relies on the assumption that every person has the right to die pain-free and with dignity, and with family and friends nearby. Like palliative care, a hospice team is comprised of doctors, nurses, caregivers, social employees and trained volunteers who manage the patient\’s pain and symptoms; assist with the emotional and spiritual aspects of dying, offer needed medications and provides, coach the family on how to worry for the patient, and, offer bereavement counseling to surviving loved ones. Whereas Medicare, Medicaid, most non-public insurance plans, HMOs, and different managed care organizations provide hospice coverage, Medicare or Medicaid does not currently cover palliative care. Some non-public insurance companies cover the costs of care, but it is vital for you to ask the palliative care supplier how or if the services can be covered and what, if any, prices you\’ll be asked to pay. The goal of hospice care is to keep pain and suffering of someone with a terminal diagnosis to a minimum, and not to cure the illness. Provided in the patient\’s home or in hospice centers, hospitals, skilled nursing homes and different long-term care facilities, hospice relies on the assumption that every person has the right to die pain-free and with dignity, and with family and friends nearby.
About the Author
Jeff Patterson has been writing articles online for nearly 2 years now. Not only does this author specialize in Pain Management, you can also check out his latest website about Honeywell Heaters Which reviews and lists the best honeywell gas heaters
In a previous blog, I raised the issue of “Advanced Directives” and how, according to a Medscape physician survey, physicians do not always honor these legal documents. One of the “excuses” cited the definition of futility in treating a terminal medical condition, arguing for palliative care as opposed to withdrawal of care. Obviously, confusion exists amongst these providers as to what constitutes comfort care versus unnecessary prolongation of life and/or exposure to unnecessary procedures in a patient with a terminal condition.
Palliative, End-of-Life and Hospice Care
Palliative care is essentially comfort care. To “palliate” means to “ease” or “make less severe” – therefore, medical care that is designed to palliate symptoms of a particular disease is care designed to ease or lessen the severity of symptoms associated with that disease. It can be in an acute condition, a chronic condition or even a terminal condition depending on the stage of the illness. Some of the symptoms often palliated are nausea and vomiting (chemotherapy, cirrhosis), anorexia (cancers, AIDS), pain (rheumatoid arthritis, cancers), shortness of breath (COPD/emphysema, interstitial lung disease), dizziness (Meniere’s disease, multiple sclerosis), incontinence (spinal cord injuries, stroke), constipation (inflammatory bowel disease, chronic pain syndromes), and many others. There are various treatments available for the treatment and/or management of these symptoms, but they are not necessarily curative of the underlying condition. Some chronic conditions, like Rheumatoid Arthritis, are manageable but not necessarily curable, so the treatment rendered is to palliate/lessen the symptoms and hopefully put the auto-immune disorder into remission for a period of time. Rheumatoid Arthritis, however, is NOT a terminal condition; patients usually die of complications or other co-morbidities. Palliative care can also incorporate a variety of specialties with overall coordination of care that involves communication with the family, spirituality and emotional support. Palliative care is a critical component of end-of-life and Hospice care.
End-of-Life care is a well-coordinated approach to end-of-life issues when a condition is deemed terminal, such as incurable metastatic cancer, end-stage multiple sclerosis or even liver cirrhosis when organ transplant is not an option. Life expectancy can vary widely, with physician guestimates being greater than 6 months (as much as one year or more). End-of-life care typically incorporates palliative care to ease the symptoms of the disease process as well as counseling services, emotional support and even spiritual support.
Hospice care is end-of-life care, incorporating palliative care, reserved for the last 6 months of life or less. Care is shifted from curative therapies to pain management and ease of other symptoms of illness. There are many Hospice programs that offer services in a variety of locations, all of which is dependent on the patient’s and the patients’ family’s wishes. They can be rendered at home, in a nursing home, in the hospital or in a dedicated Hospice facility. Services provided by these organizations can even include basic housekeeping, personal hygiene care, grocery shopping, and even companionship in addition to the palliative medical therapies.
Where do advanced directives come into play?
Advanced directives can affect every one of these aspects of care. They reflect the patient’s or the patient’s medical power of attorney’s wishes regarding palliative care modalities, end-of-life care and Hospice care.
About.com’s website on palliative care offers a great example of palliative care that transitions to end-of-life and at-home Hospice care for “Aunt Tilly”.
A patriarch of the family has essentially been healthy his entire life, shoveling snow and cutting grass into his 85th year of life. Things shift during the 86th year, and he develops congestive heart failure which has triggered multiple falls and syncopal episodes, presumably from hypoxemia. There are several hospitalizations to evaluate his condition with institution of multiple medical therapies/drugs to stabilize his condition. Unfortunately, his heart is weak, and ultimately his kidneys begin to fail. No advanced directives had ever been discussed, as with many people of his generation; fortunately, he remained of sound mind. At first, everything was a whirlwind……medication infusions to prevent irregular heart rhythms, blood transfusions to address his anemia since the kidneys were no longer working properly to stimulate the bone marrow to make more red blood cells, and finally, dialysis??? Well, if the kidneys are not working very well, not filtering the blood to produce urine and not stimulating the bone marrow to produce RBCs, we have to fix this, right? What was not mentioned was that blood transfusions have to be given with intravenous fluids, which then worsen the fluid overload and congestive heart failure making it even more difficult for the poor man to breathe. Higher and higher amounts of oxygen are needed to keep him comfortable, while his body is swelling up with fluids. So, STOP THE MADNESS! This family patriarch, after being informed of the complicated nature of his essentially end-stage condition, opted to forego hemodialysis; he did not want to be hooked-up to a machine for 3 hours a day, 3 days a week, just to filter his blood in an attempt to garner perhaps 6 more months of life; that kind of life had no quality to it in his mind. In addition, since the blood transfusions would only worsen his breathing, he refused any more blood. He wanted to be kept comfortable with pain medications and oxygen which was done in the hospital; he did not want to be shocked (defibrillated) or resuscitated in any way. Comfort measures were provided in the hospital where he was given a large, private room, and he passed away peacefully within 3 days; there were no restrictions on family visitation, and he was surrounded by those dearest to him. A chaplain was available within minutes of his death to comfort the family and offer prayer to ease everyone else’s suffering and loss; this patriarch was already at peace and without pain.
In this particular example, it was beneficial that my family member was of sound mind to make his own decisions at the end of life with regard to blood transfusions and hemodialysis. It would have otherwise been very difficult for the family to come to some kind of consensus. It was also better, in this case, that he remain in the hospital since his wife was still living and would have to return to their home alone following his death; having her live in the house in which her husband of 67 years had died would have been too much for her to bear. This emphasizes the importance decision-making while one is of sound mind. Cancers can spread to the brain; toxic metabolites that accumulate when vital organs fail can render a patient confused or even comatose; acute strokes can also affect one’s cognitive capabilities, not to mention other organ systems (breathing, toileting, swallowing, etc.).
Advanced directives can be as precise or as vague as one desires. It seems to me that the more detailed the directive, the less chance one encounters of a physician or care provider ignoring the directive or “interpreting” the directive in a way that confuses loved ones, exposing the patient to unnecessary procedures and/or life-extending treatments.
Have you ever had to deal with any of these issues – advanced directives, palliative care, end-of-life care or hospice care? What has your experience been? Do you have any suggestions that might be helpful to others, who may be faced with similar issues?
More on this topic soon: What constitutes a terminal condition?
Making Your Wishes Known at the End of Life (NY Times article by Dr. Pauline W. Chen )
Image from mylocalhealthguide.com
This entry was posted on Tuesday, December 21st, 2010 at 7:34 am and is filed under Advanced Directive, Chronic Pain, End-of-Life Care, Health Care Agent, Hospice Care, Medical Ethics, Medical Procedures, Palliative Care. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
An important part of that care comes from volunteers, those who feel a special calling to share compassion and kindness when a family needs it most.
Hospice is not a place. It’s a concept that focuses on caring, not curing, for people facing a life-limiting illness or injury. Hospice involves a team-oriented approach to medical care, pain management, and emotional and spiritual support tailored to the patient’s needs and wishes, according to the National Hospice and Palliative Care Organization.
Among the members of such a team are physicians, nurses, home health aides, social workers and clergymembers. One of the vital components of the support staff is the volunteer — someone to fill in the gaps and help a patient, and his or her family, through the precious final weeks, days and minutes of life.
In fact, for most hospices, volunteers are not just a luxury — they’re a requirement. Federal regulations require that for hospices that participate in Medicare, 5 percent of all patient care hours must be provided by trained volunteers.
“That’s because the philosophy of hospice, when it began in the 1970s, was all volunteer,” said Clara Jehle, volunteer coordinator for Hospice of Montgomery. “Medicare wanted to retain that volunteer image, so they put in (that standard.)”
The volunteer provides companionship and socialization for a patient who is homebound or in a nursing home or assisted living facility, and helps the family meet its emotional needs, said Marti Galloway, manager of volunteer services for VistaCare Hospice.
“When you become sick with a terminal illness, your world just becomes increasingly smaller as you become sicker,” Galloway said. And if the patient and the primary caregiver don’t have adequate support, everyone’s quality of life suffers.
That’s where the most visible hospice volunteer steps in — to provide respite care to a caregiver and family. It is not always easy, but it is emotionally rewarding.
“It’s such a blessing to be invited into someone’s home,” said Mona McDermott, bereavement, social work and volunteer coordinator for Baptist Hospice. “It’s a very special time in their lives. It can be sad, but it can also be healing, and a time to make wrongs right.
“To be allowed into someone’s life and home at that time is incredible.”
The volunteer is often relieving a caregiver, to give that person some time to himself or herself for a few hours.
In that time, the patient may want company or comfort, or nothing at all.
“If they want to talk, we talk, but if they want to sleep, we let them,” said Gary Jones, a volunteer with Hospice of Montgomery for about three years.
The intimacy required at such a time means that the volunteer and family have to be a good fit for each other, and that’s one of Jehle’s tasks as volunteer coordinator for HOM.
“I look at the characteristics and personalities of the patient and the family, and see what fits best,” Jehle said.
Most who volunteer for a hospice have a personal connection. They had a close friend or family member who received hospice services, so they want to give something back.
“They realize how important it is to have someone to talk to, to have the things they needed,” said Paul Cowley, chaplain of Wiregrass Hospice.
But it’s crucial that such a volunteer be well along in the grieving process, something a coordinator can determine in the interview.
“If I think they’re still grieving, I’ll steer them to other ways to volunteer, maybe administratively in the office,” said Galloway of VistaCare Hospice, which is owned by the Gentiva company.
In fact, many don’t realize that there are several avenues for volunteering with hospice — not just interacting directly with end-of-life patients.
“Whatever special skill they have, we see if we can find a way to use it,” Galloway said.
For example, some ladies’ church groups crochet or knit hats and lap blankets for patients; one group makes shawls that are prayed over as they’re being made, Galloway said.
One of McDermott’s volunteers made Christmas stockings for patients this year. Local church groups gave personal grooming items to fill the stockings. After that, a group of young people at the Mount Meigs youth facility put the stockings together.
“We have one group, one of the local churches, and they take up money to buy cases of Ensure, which are very expensive,” McDermott said.
The ones who provide clerical help are just as important as those who sit with patients.
“There’s a lot of paperwork we have to keep up with,” said Cowley, the chaplain at Wiregrass Hospice, which, like VistaCare, is a for-profit hospice owned by Gentiva.
“Hospice is a very paper-intensive world,” she said. Any help with filing and organizing helps the medical records person to operate more efficiently.
Such help is even more important to the nonprofit hospices.
“We can never pay enough for staff,” Jehle said.
There are even ways for the homebound to help.
“If you want to do bereavement or Christmas card mailings, we can bring the materials to you, and you can prepare it and we can pick it up,” McDermott said.
Retiree Charlie Brown has volunteered with Hospice of Montgomery for five or six years, and his role is very straightforward: He runs plans of care between doctors’ offices and the HOM office, twice a week.
His satisfaction comes in knowing he’s helping the staff of HOM, and helping them in their mission.
“You’ll certainly get some personal satisfaction out of helping,” Brown said. “For me, it’s ideal to spend some hours outside the home.”
Linda Gates has volunteered with Baptist Hospice for almost two years. She works at a grief camp for bereaved children, which is an annual event each spring at Camp Chandler.
“It’s to help them get through their grief, because children grieve differently than adults,” Gates said. “Coming to the camp gives them a chance to talk about (their grief), and they’re with other kids. I think that helps them open up.”
She also sends notes each month to bereaved families. “I try to write something to give them some peace, something to let them know that we love them and that we care.”
Some volunteers help with fundraising. While hospices receive Medicare, Medicaid and private insurance reimbursements, raising money is an essential component for both Baptist Hospice and Hospice of Montgomery, which are nonprofits.
Hospice of Montgomery has its annual Monte Carlo benefit; the Baptist Health Care Foundation raises money for Baptist Hospice through its annual Montgomery Family Christmas concert, which this year featured singer John Tesh.
Volunteers help with the behind-the-scenes work at those events as well.
While many hospice volunteers are retired, people of all ages find ways to help.
“We have some who have been volunteers for more than 25 years,” McDermott said. “Some are almost 90 years old, and they’re still very active.”
Teens can help, too. Min-ji Kim is a senior at St. James School and is in her third year of volunteering. She helps Galloway with administrative functions at VistaCare.
Kim wants to be a doctor, and thought hospice would be a good way to expose herself to the medical field.
“If I have an opportunity, I’ll continue (volunteering) at college,” she said.
No matter the age, all hospice volunteers have a special gift.
“It takes a giver, a selfless, servant-oriented person. A person who gets pleasure in sharing themselves with another person, a helper, a nurturer,” Galloway said.
The work can be challenging, but is very rewarding.
“Without exception, volunteers tell me they’re the ones who were blessed by the experience,” Galloway said.
I am not a professional photographer but my work in hospice teaches me the value of living and photos of loved ones is part of that valuing process.
This weekend I took a few shots of my family celebrating an early Christmas dinner together.
My mother usually loves to have her picture taken and then 99% of the time complains that it was not a good picture.
This year I asked her to do something different from the traditional, “look at the camera and smile” routine.
“Mama, look at someone in this room and remember a wonderful thought about them or a wish you have for them”. She looked at my niece and smiled that wonderful smile that can only come from the heart of someone that loves another. The picture was perfect. I was almost surprised when she looked at the shot and said, “That’s……that’s actually a good picture of me!”.
So began a new tradition. Each person in the room chose another person on which to focus and think kind or loving thoughts. Picture after picture came out great. The best part is that when these pictures are reviewed, each of us will remember the person for whom we wished love for shared treasured life moments.
Hospice has taught me how to take great pictures; take them with love.
BANGOR, Maine (NEWS CENTER) — St. Joseph Healthcare employees have donated hundreds of items over the past several weeks to give to the hospital’s Homecare and Hospice patients.
Employees spent Monday morning packing gift bags filled with everything from pasta, soup, and other condiments to tissue boxes and other paper products. Hospital officials say they packed more than 60 bags to distribute to patients. St. Joseph employees say the gift bags are a surprise to the patients who are getting them, and they can go a long way especially during the holidays.
“These folks are going through a lot in their homes, and are going to be very appreciative of the things that were gathered from folks here at the hospital and homecare,” said Homecare and Hospice Clinical Leader Janice Hatch.
Hatch says the gift bags will be distributed to patients all week leading up to Christmas. She says it’s the first year St. Joe’s has done the program for its Homecare and Hospice patients.