Palliative Care Conversations

Thomas J. Smith, MD: An Overview of Palliative Care from ASCO 2011

2011-10-13T15:23:00.000-07:00

A Chance to Finish the Business of Living

2009-08-25T08:35:00.000-07:00

Sometime ago Don Berwick, MD spoke about 20 improvements that doctors could make in the end of life care of their patients that begins in a simple conversation. Berwick recommended the following considerations as his top three suggestions:

1.Ask yourself as you see patients, "Would I be surprised if this patient died in the next few months?" For those "sick enough to die," prioritize the patient's concerns - often symptom relief, family support, continuity, advance planning, or spirituality.

2.To eliminate anxiety and fear, chronically ill patients must understand what is likely to happen. When you see a patient who is "sick enough to die" - tell the patient, and start counseling and planning around that possibility.

3.To understand your patients, ask (1) "What do you hope for, as you live with this condition," (2) "What do you fear?," (3) It is usually hard to know when death is close. If you were to die soon, what would be left undone in your life?," and (4) "How are things going for you and your family?" Document and arrange care to meet each patient's priorities.

All too often the task of finishing the business of living gets left undone because the end of life conversation has never taken place for whatever reason. I strongly recommend reading Dr. Berwick’s 20 recommendations and sharing them widely.

You can find Berwick’s the full article on the website Americans for Better Care of the Dying at the link below:
http://www.abcd-caring.org/tools/intern.htm

Health Care Reform Inflammatory Language

2009-08-11T12:51:00.000-07:00

Health care reform is a scary subject for ordinary Americans and this is not been helped by the tone of the current national debate on this issue which has turned terrible nasty. One of the most heated concerns to have emerged recently relates to end-of-life conversations. End-of-life conversations are difficult at the best of times and made all the more difficult in these uncertain days of economic upheaval when many Americans have lost their jobs, health care insurance and homes. Unfortunately, some public figures and national leaders have chosen to offer their critique of the proposed health care reforms using only the most inflammatory language possible. The tenor of this debate does not bode well for the American public in terms of any real substantial change to a health care system which is too costly to sustain and unequal in terms of access. These difficult days call for true leadership which does not fail for lack of nerve to embrace the courage of change in the best interests of all in the culture. End-of-life conversations invite everyone involved in the conversation to figure out the right thing to do in each individual case and to have the courage to follow through on the difficult decisions reached. In the same way the American public needs national leaders who will engage the health care reform debate with the same gravitas as those loved ones involved with end-of-life decisions.

George Hankins Hull

2005-12-29T10:16:00.000-08:00

Therapeutic Harp
By

Ann Bewley, Ph.D.

Music as a Therapeutic Modality

The beneficial relationship between music and healing has been well established for centuries. Documents dating back to 1500 BC depict Egyptian physicians employing music for healing the sick. In ancient Greece, Pythagoras taught his students ways in which certain musical notes, chords, and melodies could induce physical responses in the body. Twelfth-century abbess and physician Hildegard von Bingen employed treatments that are much like those now advocated by modern practitioners of holistic medicine.

The use of music as a tool for healing continued in Europe through the 17th century until it began to fall out of favor during the dawn of the Age of Reason. However, current scientific research into the effectiveness of complementary therapies is providing new evidence that music can assist and effect healing. Music can alter brain and body chemistry and affect physiological rhythms such as pulse rate and breathing. It can regulate cortisol levels, facilitate relaxation, and improve immune system functioning. Specific vibrations have been shown to alter DNA and generate healing responses at a cellular level. Music impacts the autonomic nervous system and directly stimulates external nerves in a way similar to acupuncture.

The Harp as a Therapeutic Instrument

Historically, the harp has been a symbol of relief and comfort. In Hebrew Scripture, the young poet and musician, David, used the harp to heal King Saul. Medieval religious art portrayed angels, considered messengers of God, holding harps. In Early Celtic culture, the harp music was played for three purposes: to facilitate sleep, to support mourning, and to bring joy.

Because of the harp’s construction and its acoustical properties, it produces music that has unique healing properties. The vibrating strings generate high quality resonance across a wide range of pitch. They produce a unique tonal color, distinctive timbre, and clear overtones.
Acoustical and Musical Factors

Music is healing because of its acoustical and musical features. The underlying principle is the idea that everything has natural frequencies at with it vibrates. Therapeutic harpists seek to find and play sounds that match the natural frequencies of their listener, creating resonance between and in them. Therapeutic harpists also match the mood of the listener with different qualities of music, particularly the musical mode, i.e., what we think of as “major” and “minor” plus five other modes based on different starting points on the traditional western (Pythagorean) scale. When we match the resonant frequency and provide modal music that matches the listener’s mood, we communicate empathy and direct healing energy to the listener. Through the principle of entrainment, we can induce change in a listener’s experience from a less to a more desirable state.

Therapeutic Harp Practitioners

Therapeutic Harp Practitioners support listeners’ emotional, physical, mental, and spiritual healing and wellbeing. They work in institutional or clinical settings such as an emergency room waiting area where harp music soothes and relaxes patients and family members. Therapeutic harp practitioners provide important and effective complementary treatment in such places as hospices, oncology infusion units, bone marrow transplant wards, intensive care units, palliative care units, and pediatric wards. They assist patients preparing for surgery and those in post-operative recovery. They may play in a labor and delivery unit where music supports the rhythm of childbirth. They are active in senior care facilities where music assists memory recall, social interaction, and community building. They also provide support to children with special needs in hospital, school, and residential settings.

Therapeutic Harp Practitioners serve in hospice and palliative care units where their music supports those who are dying and comforts loved ones. There, they offer patients and family members comfort and help diminish their anxiety, loneliness, fear, and physical and emotional pain.

Many therapeutic harp practitioners are licensed or trained in other disciplines such as counseling, nursing, medical practice, ministry, massage, occupational, physical, and rehabilitation therapy. They find effective ways to bring together their skills as therapeutic harp practitioners and their mastery of their primary discipline in their practice (see application to psychosynthesis below).

Training and Certification

Certified Therapeutic Harp Practitioners have met and adhere to the standards of the International Harp Therapy Program (IHTP) and participate in ongoing professional development through national symposiums with the IHTP.

The one-year training program educates harpists in principles of counseling and psychology, music therapy, and resonant kinesiology. The program provides practical knowledge of a wide range of study including interpersonal skills and special needs of both acute and long term care patients. Practitioners gain proficiency using the small harp to utilize the healing energies of sound vibrations and become comfortable using the instrument in health care settings. They build a substantial repertoire and cultivate their improvisational and other technical and musical skills as harpists, and are certified as therapeutic harp practitioners upon meeting the requirements for successful completion of the program.

Harpists may also undertake the Music for Healing and Transition Program, becoming Certified Therapeutic Musicians upon completion of training. The work of CMPs is comparable to that of CTHPs. The advantage of this training is its structure (five weekend modules) and the fact that musicians of all sorts – vocalists, guitarists, cellists, clarinetists, mountain dulcimer players, flutists, etc.) join harpists in this training, making the learning experience and exchange of ideas more “interdisciplinary.”

Application to Psychosynthesis

Therapeutic harp music can play a part in the balance and synthesis of apparently opposing subpersonalities. If each subpersonality has its own resonant frequency (my theory), conflict between them could be viewed as a dissonant or disharmonious energetic “chord” (i.e., two or more notes sounded together). Matching each frequency separately in the process of bringing subpersonalities into greater harmony with one another can lead to a more consonant and harmonious “chord.” Instead of making energetic music “against” one another, subpersonalities that balance and synthesize can sing together.

For more information about harp music for
healing and transition please contact:

Anne Bewley, Ph.D.
58 Holderness Road
Center Sandwich, NH 03227

About Anne R. Bewley
Anne R. Bewley Ph.D., LCMHC is an associate professor of psychology at Colby-Sawyer College, New London, NH, where she teaches courses on the fundamentals of helping interaction. With over 15 years of experience in counseling, consulting and education, Anne is a dynamic speaker who conducts seminars for helping professionals on topics such as interpersonal communication in healthcare settings. An accomplished harpist and Certified Therapeutic Harp Practioner, Anne has recorded several CDs of therapeutic harp music and provides music at the bedside of hospital patients and hospice residents in Concord, NH. Anne is also author of Meta-Recovery: A Journey Beyond the Twelve Steps. Her latest book, At the Heart of the Matter: Communicating Care in Helping Relationships, is a resource for caregivers who wish to cultivate effective verbal communication skills to optimize their work with others. As a Licensed Clinical Mental Health Counselor, Dr. Bewley puts into practice what she teaches.

If you are interested in learning about Anne's Music please follow the link below:
http://www.uniuniques.com/Music/Bewley.htm

Aromatherapy & Acupunture

2005-12-28T11:53:00.000-08:00

Aromatherapy and Acupunture may be used as complementary treatments that enhance the health care received from a physician or hospital.

Aromatherapy
Aromatherapy is a noninvasive method of healing based on the therapeutic use of essential oils. Essential oils are highly-concentrated, non-oily, subtle, volatile liquid steam distilled from various parts of aromatic plants. A variety of methods of application can be used to achieve the desired effect: inhalation, compress, ointment mixture, or dilution in a carrier oil, which is applied to the body using a systematic, light touch. Aromatherapy can complement other treatments, help to reduce stress and anxiety, relieve pain and nausea, and restore energy, health, and a sense of well-being.

History
Aromatherapy has been around for 6000 years or more. The Greeks, Romans, and ancient Egyptians all used aromatherapy oils. The Egyptian physician Imhotep recommended fragrant oils for bathing, massage, and for embalming their dead nearly 6000 years ago. Imhotep is the Egyptian god of medicine and healing. Hippocrates, the father of modern medicine, used aromatherapy baths and scented massage. He used aromatic fumigations to rid Athens of the plague.

The modern era of aromatherapy is dawned in 1930 when the French chemist Rene Maurice Gattefosse coined the term aromatherapy for the therapeutic use of essential oils. He was fascinated by the benefits of lavender oil in healing his burned hand without leaving any scars. He started investigating the effect of other essential oils for healing and for their psychotherapeutic benefits.

During world war II, the French army surgeon Dr. Jean Valnet used essential oils as antiseptics. Later, Madame Marguerite Maury elevated aromatherapy as a holistic therapy. She started prescribing essential oils as remedy for her patients. She is also credited with the modern use of essential oils in massage.

Acupuncture
Acupuncture is one of the oldest, most commonly used medical procedures in the world. Originating in China more than 2,000 years ago, acupuncture began to become better known in the United States in 1971, when New York Times reporter James Reston wrote about how doctors in China used needles to ease his pain after surgery.

The term acupuncture describes a family of procedures involving stimulation of anatomical points on the body by a variety of techniques. American practices of acupuncture incorporate medical traditions from China, Japan, Korea, and other countries. The acupuncture technique that has been most studied scientifically involves penetrating the skin with thin, solid, metallic needles that are manipulated by the hands or by electrical stimulation.

Any decision you make about your health care is important--including deciding whether to use acupuncture and should be discussed fully with your doctor.

Additional information on Acupuncture:
The National Center for Complementary and Alternative Medicine (NCCAM) has developed a fact sheet to provide information on acupuncture. It includes frequently asked questions, issues to consider, and a list of sources for further information.
You can find the NCCAM fact sheet at the following link:
http://nccam.nih.gov/health/acupuncture/#acupuncture

20 Improvements in End of Life Care

2005-09-19T12:43:00.000-07:00

20 Improvements in End of Life Care
Changes Internists Could Do Next Week!

Don Berwick, MD

Institute for HealthCare Improvement at the
ACP-ASIM Annual Meeting, April 22, 1999
(prepared by Americans for Better Care of the Dying)

1.Ask yourself as you see patients, "Would I be surprised if this patient died in the next few months?" For those "sick enough to die," prioritize the patient's concerns - often symptom relief, family support, continuity, advance planning, or spirituality.

2.To eliminate anxiety and fear, chronically ill patients must understand what is likely to happen. When you see a patient who is "sick enough to die" - tell the patient, and start counseling and planning around that possibility.

3.To understand your patients, ask (1) "What do you hope for, as you live with this condition," (2) "What do you fear?," (3) It is usually hard to know when death is close. If you were to die soon, what would be left undone in your life?," and (4) "How are things going for you and your family?" Document and arrange care to meet each patient's priorities.

4.Comprehensive and coordinated care often breaks down when providers don't have all the facts and plans. The next time you transfer a patient or a colleague covers for you, ask for feedback on how patient information could be more useful or more readily available next time.
5.Unsure how to ask a patient about advance directives? Try: "If sometime you can't speak for yourself, who should speak for you about health care matters?" Follow with: 1) "Does this person know about this responsibility?" 2) "Does he or she know what you want?" 3) "What would you want?," and 4) "Have you written this down?"

6.To identify opportunities to share information with patients and caregivers, ask each patient who is "sick enough to die:" "Tell me what you know about ________(their disease)." Then: "Tell me what you know about what other people go through with this disease."

7.Most internists' practices have educational handouts on heart failure, COPD, cancer and other fatal chronic illnesses to give to patients. Read them - if your handouts do not mention prognosis, symptoms, and death, exchange them for ones that do. Perhaps make The Handbook for Mortals and other resources available to your patients.

8.Some patients and their families are getting most of their information from the Internet. Log onto a patient-centered internet site about an eventually fatal chronic illness to learn what is of interest to patients and families.

9.Is coordinating the care of your chronically ill patients taking up too much of your time? Call a local advocacy group (American Heart Assoc., American Cancer Society, etc.) for help, or consult with a care management service.

10.Discussing and recording advance directives with all your patients may take a while. How many patients over the age of 85 do you have? Start making plans with them. Expand to all who "are sick enough to die."

11.Use each episode in the ICU or ER as a "rehearsal." Ask the patient what should happen the next time. Be sure the patient has all necessary drugs at home and knows how to use them. Can you promise prompt relief from dyspnea near death? Tell the patient and family what's possible, and make plans together.

12.Ask your next patient who is "sick enough to die" whether anything happened recently regarding their medical situation for which they were unprepared. Work to anticipate the expectable complications and to have plans in place.

13.Since meperidine (Demerol) is almost the only opioid which has toxic metabolites and thus is contraindicated for chronic pain, banish meperidine from your prescribing and from the formularies where you work.

14.Very sick people will often be most comfortable at home or in nursing homes. Identify programs that are good at home care, send patients to those quality services, and work with them to fill the gaps your patients encounter.

15.Feedback on performance guides improvement. Find the routine surveys, administrative data, and electronic records that record symptoms, location of death, unplanned hospital or ER use, family satisfaction after the death, and other outcomes.
Set up routines to get feedback on performance and improvement every month.

16.Except in hospice, most families never hear from their internist after a death. Change that! Make a follow-up phone call or set a visit to console, answer questions, support family caregivers, and affirm the value of the life just recently ended. At least, send a card!

17.Working with very sick patients who die is hard on caregivers. Next week - and every week
- praise a professional or family caregiver who is doing a good job.

18.We can't really change the routine care without changing Medicare. Contact your Congressional representatives to ask forhearings, demonstration programs, research, and innovation to improve the Medicare program.

19.Some of our language really does not serve us well. Never say "There's nothing more to be done," or "Do you want everything done." Talk instead about the life yet to be lived, and what CAN be done to make it better (or worse).

20.Patients and families need to be able to rely upon their care system. Consider what you can PROMISE on behalf of your care system - pain relief, family support, honest prognosis, enduring commitment in all settings over time, planning for complications and death, and so on. Pick a promise that your patients need to hear and start working with others to make it possible to make that promise! Quality improvement strategies work!

please visit for more information
http://www.abcd-caring.org/

What is palliative care?

2005-08-29T11:43:00.000-07:00

This draft document has been prepared by George Hankins Hull

Palliative Care
The aim of palliative care is to ease the suffering that results from illness. Palliative care seeks to provide treatment for your symptoms, even when the underlying disease cannot be cured. The goals of palliative care are to relieve your pain and other discomfort and to help reduce your family’s stress. In addition, palliative care seeks to provide information to help you cope and live with a chronic illness. Palliative care encompasses emotional, social, and spiritual needs as well. During the course of your illness, a palliative approach to care can help you and your family to achieve a better quality of life.

To request a palliative care consultation
You or your family can make a request to consult a palliative care team representative by speaking with your nurse or doctor. Your health care team also may decide to request a palliative care consult. A palliative care representative will visit you within 24 hours of a request. After the visit, our palliative care team will work with your primary doctor to make suggestions for your care. A palliative care team member will visit you daily until your discharge from the hospital. You may request a palliative care consult at any time during your hospitalization.

Our palliative care team
At LRGHealthcare, our palliative care team is staffed with dedicated professionals who work with you to help you cope and find options for relief of any symptom related to your illness. In addition, the palliative care team can help you with important medical decisions, with practical needs, and provide pastoral and emotional support. Our palliative care team is staffed by professionals who are dedicated to you and your family and will work closely with your primary doctor to provide the best possible care for you and your family.

A cooperative approach to care
The members of our palliative care team work collaboratively with your doctor to recommend treatment for you. A wide range of medical treatments are available for symptoms such as pain, nausea, shortness of breath, and other distressing symptoms. In addition, the palliative care team can recommend alternative forms of treatment, such as music therapy, aroma therapy, acupuncture and massage. Alternative treatments can be used in concert with traditional medical treatments, such as chemotherapy and radiation therapies.

Supportive care
Our palliative care team can help you determine personal treatment goals and assist you to choose among the various treatment options. The palliative care team can help you plan for your discharge from the hospital and for ongoing palliative care after you leave. The LRGHealthcare palliative care program offers counseling for emotional and spiritual concerns, as well as bereavement support for families.

Decision Making
When you live with a serious illness, you and your family face some hard choices. You may feel the need for specialized assistance to consider the various options presented to you. Help is available to you through the palliative care team to assist you and your family as you make important decisions about the end of life and treatment issues.

Models of Palliative Care

2005-07-27T10:46:00.000-07:00

Special note: This information on models of palliative care was adapted from material provided by the Center to Advance Palliative Care.
Adopted by George Hankins Hull Spiritual Care Coordinator LRGHealthcare

Solo Practitioner Model

Consultative service with Doctor (MD) or advanced nurse practitioner (ANP) provides initial assessment and communication with attending physician, nursing, and patient support staff.
May or may not write patient orders.
MD or ANP refers patients to needed services (e.g. social work, chaplain, dietitian, pharmacist, care manager, rehab therapist, pain management, alternative therapist or volunteer), discusses needs in patient conference, and communicates with clinicians.
Assists patient and family with advance directives and plans for future.

Service Model

MD or ANP receives referrals from attending physician, hospital staff, patient, or family.
All units in hospital deliver palliative care as part of their stated mission.
MD or ANP develops protocols for patient care in conjunction with treatment team, educates staff about palliative care and protocols.

Staffing and Budget Implications

One FTE MD or ANP
0.2 FTE clerical support
Access to and time allotted for social worker, nursing, physical and occupational therapists (PT and OT), and pharmacy to respond to referrals (should be monitored for time requirements)
0.2 FTE finance person
0.2 FTE medical director (if ANP-led)

Patient Volume Thresholds

Patient coordination is intensive and ANP spends time with patient providing psychosocial support as well as symptom management and family teaching. Staff and community education.
Literature does not define volume but anecdotal reports suggest maximum comfortable caseload of 4 new cases per day and average census of 10 patients weekly.

Benefits

Lower start-up costs and financial risk.
Opportunity to develop a program based on existing patient population
Less threatening to medical staff.
Builds on existing programs and services and uses them whenever possible.

Disadvantages

Program rests on one individual's shoulders.
Patient volume quickly limited by workload.
Service effectiveness is dependent on staff knowledge and cooperation.
All units referring patients.

Full Team Model

Consultative service with full team of doctor, ANP or nurse and patient support staff assesses and follows patients referred by attending physician.

Provides advice to primary physician, or may assume all or part of care of patient and/or write patient orders.
Doctor bills fee-for-service as a consultant physician.
Team refers patient to needed services and discharges to appropriate community settings, discusses needs in patient conference, and communicates with all team members.

Service Model

Team works in unison to coordinate care plan and provide services.
Social worker on team may assume role of case manager.
Team develops and uses standing orders to manage patient.
All hospital units deliver palliative care as part of their stated mission.

Staffing and Budget Implications

0.5 to one FTE medical director.
One FTE ANP.
0.5 medical social worker/care manager
One FTE clerical support.
Access to and time allotted for social work, nursing, PT, OT, chaplain, dietitian, pain management, pharmacy and alternative therapists to respond to referrals (should be monitored for time requirements).
0.2 FTE finance person.

Patient Volume Thresholds

Number varies, depending on whether patient is transferred to the team for all management.
Can reach the largest number of patients and does not restrict the number of beds occupied by patients requiring palliative care services.

Benefits

More medical expertise available.
Provides alternative to medical staff that struggle with implementing new skills and knowledge.
Consultative service reaches largest number of nurses and physicians through bedside and nursing station teaching and role modeling.
Builds on existing programs and services and uses them whenever possible.

Disadvantages

Added costs for team with limited, or no, additional revenue.
Physician must establish rapport with many medical staff members; consultant serves as an advisor to the primary physician and recommendations may or may not be followed.
Service effectiveness is dependent on staff knowledge and cooperation.
All units referring patients need to be.

Geographic Model

Inpatient program with all patients on designated unit.
Inpatient staff team (doctor, ANP, social worker, chaplain, therapists) specially trained to provide palliative care manages patients.
Staff is trained in palliative care and focuses on creating an inpatient environment supportive of patients and families.

Service Model

Patients referred to palliative care program are screened by team for appropriateness.

Appropriate patients are transferred to service when they meet admission criteria
Palliative care team assumes responsibility for patient management and discharge planning.

Patient may be followed on an outpatient basis after discharge.

Staffing and Budget Implications

0.5 to one FTE medical director.
One FTE ANP.
0.5 – 1.0 FTE medical social worker.
0.5 – 1.0 FTE chaplain.
0.2 FTE finance person.
Nurse manager.
Inpatient unit staffing.
Preferably, unit is situated where staff are likely to have training in fundamentals of palliative care.
An allocation of DRG revenues may be required when a patient transfers from another unit to palliative care.

Patient Volume Thresholds

Geographic unit approach allows the institution to designate beds, yet allow the number of beds to flex with patient volume.
Most efficient staffing with 12 or more beds, preferably in rooms with space for family members to stay and room for staff and family members to meet.
Because reimbursement is still acute care-oriented, the unit can flex to a capacity deemed appropriate to staffing levels and clinical expertise.

Benefits

The program has a clinical milieu and staff to support it.
Greater control over patient care.
Higher visibility and influence within the hospital.
Inpatient unit can be made patient-and family-friendly.
May be easier to manage overuse of resources, length of stay.
Opportunity for philanthropic support more easily developed.
Can convert all or part of an existing unit to minimize additional staffing.

Disadvantage

Geographic patient concentration deprives staff in other parts of the hospital from exposure to the service and learning opportunities.
May be viewed as the "death ward," making physicians reluctant to refer patients.
Unless beds can be shared efficiently with an adjacent unit, under-use of continuous nursing coverage beds due to low referral volume will translate into losses for the unit

Palliative Care Mission Statement

2005-07-01T11:19:00.000-07:00

Palliative care is life affirming and regards dying as a natural part of the human experience.
The goal of palliative care is to achieve the best possible quality of life through:

the relief of suffering
control of symptoms
the restoration of functional capacity while taking into account personal, cultural, religious values, beliefs, and practices of the individual patient and family concerned.

Interdisciplinary Approach:

Palliative care requires an interdisciplinary approach calling upon the expertise of, medical staff, nursing staff, care managers, social workers, chaplains and volunteers who in cooperation with family members and friends provide patient care.

Smooth Transitions between Hospital and Community Services:

Palliative care encompasses the full array institutional and community resources such as hospital, hospice, home care, long-term care, and adult day care to ensure a smooth transition between institutional settings and community services.

Five Principles of Palliative Care:

1. Palliative care respects the needs and choices of the dying person.

Respects your needs and wants as well as those of your family and other loved ones.
Finds out from you who you want to help plan and give you care.
Helps you understand your illness and what you can expect in the future.
Helps you look at your options concerning where you get health care, where you want to live and the kinds of services you want.
Helps you work together with your health care provider and health plan to solve problems.

2. Palliative care looks after the medical, emotional and religious needs of the dying person.

Acknowledges that dying is an important time for you and your family.
Offers ways for you to be comfortable and ease pain and other physical discomfort.
Helps you and you loved ones make needed changes if the illness gets worse.
Makes sure you are not alone.
Understands that family dynamics can be difficult when under stress especially when fears and painful feelings began to surface.
Forsters opportunities for you to share the things that are most important to you.
Helps you reflect upon what gives your life meaning so that you may finish the business of living and die at peace with yourself and others.

3. Palliative care supports the needs of loved ones

A philosophy of palliative care understands that families and loved ones need help, too.
Offers support services to family caregivers by providing counseling and respite opportunities.
Helps family and loved ones as they begin to come to terms with the grieving process.

4. Palliative care helps gain access to needed health care settings and providers.

By encouraging an interdisciplinary approach to patient care by bringing together doctors, nurses, pharmacists, pastoral caregivers, social workers and personal caregivers.
Appoints a care manager to ensure your care needs are met by ensuring a smooth transition between care settings.

5. Palliative care ensures quality care at the end of life.

Helps care providers learn about the best ways to care for dying people by providing education and needed pastoral and emotional support.
Seeks funding by private insures, health plans and government agencies.

Adapted Last Acts , care and caring at the end of life, Precepts of Palliative Care
George Hankins-Hull Spiritual Care Coordinator LRGHealthcare

When Palliative Care Begins

2005-07-01T10:57:00.000-07:00

Discussion: Sometime ago a New England newspaper, the Worcester Telegram & Gazette, carried a story entitled "Various Pathways Lead to a Good Death." in which a retired former chief of surgery, Dr. H. Brownell, spoke of his concern that too many patients die what he called ‘a bad death.’ In the article Brownell spoke about seeing patients, including his own, die in an intensive care unit with tubes poked into their chests, their bellies and just about every orifice of their bodies. He further commented about patients resuscitated with so much fluid that their faces were unrecognizable, arms black and blue from needles and blood sticks, in severe pain and unable to communicate—and with very little hope of survival. "No one," he commented, "should have to die like this." Janet L. Abrahm, M.D., F.A.C.P., at the University of Pennsylvania School of Medicine, Philadelphia, encourages physicians to broaden their concept of care for patients who are terminally ill. Dr. Abrahm comments, "when one of our patients has an incurable illness, we physicians must expand our focus of care beyond the disease to encompass all dimensions of the patient’s distress. That is when we begin to deliver palliative care."

What is palliative care?
Palliative care is a specialized form of health care that meets the physical, emotional and spiritual needs of both an individual facing a life-threatening illness and his or her loved ones. With palliative care treating physical, emotional and spiritual suffering is as essential as treating the underlying disease regardless of whether the disease is curable or not.

When the physical, emotional and spiritual needs of a terminally ill person are met, the journey towards death can become an enriching experience that gives meaning and completeness to life. By helping people make choices about their treatment, what services they need and where they want to be cared for, they are given dignity at a time when they need it most.

Family members and friends can also find this an intense and difficult time, which may leave lasting psychological scars. Palliative care provides support and help needed to not only cope with changes in their loved one but also grow in love and friendship with them. Bereavement support is a part of palliative care as the transition from death of a loved one to life without them can be very difficult.

When does a person need palliative care?
Palliative care can be helpful at any stage of a life-threatening or chronic illness. In the old view of medical care the palliative care team became active when a doctor told the patient that they could no longer be cured. Today, palliative care therapy works side by side with curative therapy.

What are the goals of palliative care?
Palliative care involves a team of health care professionals who can help terminally and chronically ill people to live the rest of their lives with dignity and healing. The first goal of palliative care is to provide as much physical comfort as possible. It is impossible to enjoy the company of family and friends if one is experiencing severe pain, nausea or shortness of breath.

Palliative care also seeks to help address life issues such as family conflict, anxiety concerning the progression of the disease, and an individual’s values and meaning regarding living and dying. The aim of palliative care is to make an individual physically comfortable so that one can think beyond the physical to emotional and spiritual health.

Philosophy of palliative care World Health Organization
Adopted from Cancer Pain Relief and Palliative Care

Affirms the right of the individual and family to participate in
informed discussions and make treatment choices.
Affirms life and regards dying as a normal process.
Neither hastens nor postpones death.
Provides relief from pain and other distressing symptoms.
Integrates psychological and spiritual aspects of care.
Provides a support system to help a person live as actively as possible
until death.
Provides a support system to help the family and loved ones cope
during the person's illness and/or bereavement.

Palliative care in general:
1. Palliative care strives to keep patients comfortable when cure is not possible.
2. Palliative care deals with the physical, emotional and spiritual needs of patients and their families.
3. Palliative care views death as a natural part of life.

World Health Organization definition of palliative care:
Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment. Radiotherapy, chemotherapy and surgery have a place in palliative care provided that the symptomatic benefits of treatment clearly outweigh the disadvantages. Investigative procedures are kept to a minimum.

Why is palliative care necessary?
Western society does not want to talk or think about death. Our medical technology has removed dying and death from our homes where it used to be a part of life. Death now occurs mostly in the hospital where it can be ignored and minimized. However, during the past thirty years the palliative care and hospice movement has gained strength. It is a movement to rediscover the lost meaning of the healthcare professional as a person who cares for another person – the whole person, not just their disease.

Unfortunately, palliative care in the hospital or home is often not available to those who need it. It is estimated that 70% of people who experience prolonged and severe pain do so without adequate treatment. Symptoms such as anxiety, depression, shortness of breath and fatigue are sometimes overlooked or ignored by healthcare professionals. The greatest fear for those facing the end of their life is being alone. Also, caregivers of people with chronic or life-threatening illnesses often feel alone in their struggle to provide good care. Palliative care
strives to deal with the many issues surrounding people who face life-threatening illnesses.

Staffing-The Team Approach:
Palliative care is best managed by a team of healthcare professionals and volunteers who are committed to a cooperative interdisciplinary approach to patient care. Members of the following disciplines may staff the palliative care team:

Physician: The physician is in charge of the medical care of the patient especially in controlling physical symptoms. The physician may discuss all sorts of symptoms with the patient including emotional, financial and spiritual problems. The doctor may then refer to other members of the care team to help in these areas.
Nursing: Nurses who are specially trained in palliative care are an excellent resource for medication and alternative treatments of physical symptoms. The nurse may be involved in planning the care of the patient at home and coordinating the necessary home services.
Pharmacist: The pharmacist would provide patient and family education concerning the medications being used by the patient. The pharmacist can prove a valuable resource for both the physician and the nurse when they are seeking treatments for difficult-to-manage-symptoms.
Social Worker: The social worker is trained in helping people with emotional, social and financial problems and is extremely helpful to the patient as well as family members. The social worker is involved with any financial issues related to treatment and or discharge home.
Care Manager: The care managers’ role in palliative care is to assure that appropriate coordination of resources takes place. This coordination could include medical care, access to community resources & benefits, as well as reinforcement of the family care structure. Inpatient and Community Care Managers would work together and with the rest of the palliative care team to assure that the patients needs are being met.
Dietitian: Eating is an activity shared by all and deeply rooted in our culture. Food serves a multitude of purposes in our lives apart from nutrition. It can function as comfort, a friend or as a means to express love as in caring for another. Dietitians can offer suggestions and support to patients and family members on symptoms interfering with the pleasure of eating, on dignity of the person or on optimizing quality of life around eating.
Chaplain: Many patients find the chaplain helpful as they review the life they’ve lived and as they begin to finish the business of living. The chaplain is also a resource to the patient’s family and staff dealing with the related ethical, social and emotional issues as they arise in end of life care.
Rehabilitation Therapists: The physiotherapists and occupational therapist are helpful in pain and symptom management with non-medical approach to therapy. They can be very helpful in recommending adaptations to the home, should the person wish to die at home.
Pain Management: The control of pain is an essential element of palliative care and patients are reassured when they understand that pain control is a high priority of care at the end of life.
Alternative Therapies: Alternative therapies such as aromatherapy, music therapy and massage, to name but a few, are important non-medical treatment options to help patients control pain, anxiety and generally improve the quality of life experienced by the patient.
Volunteers: Volunteers spend time with the patient and family providing supportive listening as well as helping tasks that they are unable to do due to their illness.
George Hankins-Hull Spiritual Care Coordinator LRGHealthcare