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1. Palliative Care Introduction

Everyone facing life-threatening illness will need some degree of supportive care in addition to treatment for their condition. The National Institute for Clinical Excellence (NICE) has defined supportive care for people with cancer. With some modification the definition can be used for people with any life-threatening condition.

Supportive Care Defined

Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximize the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.

Supportive care should be fully integrated with diagnosis and treatment. It encompasses:

• Self help and support
• User involvement
• Information giving
• Psychological support
• Symptom control
• Social support
• Rehabilitation
• Complementary therapies
• Spiritual support
• End of life and bereavement care

Palliative Care Defined

Palliative care is part of supportive care. It embraces many elements of supportive care. It has been defined by NICE as follows:

Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best 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 other treatments.

Palliative care aims to:

• Affirm life and regard dying as a normal process
• Provide relief from pain and other distressing symptoms
• Integrate the psychological and spiritual aspects of patient care
• Offer a support system to help patients live as actively as possible until death
• Offer a support system to help the family cope during the patient’s illness and in their own bereavement

Who Provides Palliative Care?

Palliative care is provided by two distinct categories of health and social care professionals:

• Those providing the day-to-day care to patients and carers in their homes and in hospitals
• Those who specialize in palliative care (consultants in palliative medicine and clinical nurse specialists in palliative care, for example)

Those providing day-to-day care should be able to:

• Assess the care needs of each patient and their families across the domains of physical, psychological, social spiritual and information needs
• Meet those needs within the limits of their knowledge, skills, competence in palliative care
• Know when to seek advice from or refer to specialist palliative care services

Specialist Palliative Care Services

These services are provided by specialist multidisciplinary palliative care teams and include:

• Assessment, advice and care for patients and families in all care settings, including hospitals and care homes.
• Specialist in-patient facilities (in hospices or hospitals) for patients who benefit from the continuous support and care of specialist palliative care teams
• Intensive coordinated home support for patients with complex needs who wish to stay at home.
  • This may involve the specialist palliative care service providing specialist advice alongside the patient’s own doctor and district nurse to enable someone to stay in their own home.
  • Many teams also now provide extended specialist palliative nursing, medical, social and emotional support and care in the patient’s home, often known as ‘hospice at home’.
• Day care facilities that offer a range of opportunities for assessment and review of patients’ needs and enable the provision of physical, psychological and social interventions within a context of social interaction, support and friendship. Many also offer creative and complementary therapies.
• Advice and support to all the people involved in a patient’s care.
• Bereavement support services which provide support for the people involved in a patient’s care following the patient’s death.
• Education and training in palliative care.

The specialist teams should include palliative medicine consultants and palliative care nurse specialists together with a range of expertise provided by physiotherapists, occupational therapists, dieticians, pharmacists, social workers and those able to give spiritual and psychological support.

Source: http://www.ncpc.org.uk/site/professionals/explained

 

2. What palliative services are provided (in Australia)? 1. Inpatient care. Clients may be admitted to a hospital or specialised unit for the relief of pain or other distressing symptoms or may need care for a period of time to provide a break for families or friends.  2. Community Based Palliative Care These services include medical support, nursing care, equipment loan, counselling, bereavement services and volunteer support. In addition, community based palliative care will help people to access other community services such as home help, meals on wheels, handymen etc. 3. Special Needs Services These statewide services provide education and support to palliative care service providers and the community in regard to specific issues such as HIV /AIDS, Motor Neurone Disease and children’s needs. 4. Bereavement Services The Palliative Care Program provides funding Community Health Services provide counselling to bereaved people. Information about grief and bereavement is available from the Better Health Channel Website. Mercy Western Grief Service also provides counselling to bereaved people in the western part of North and West region. Bereavement services are also available through all community palliative care services. 5. Education and Research The Palliative Care Program provides funding for three academic chairs in Palliative Care with two chairs (one in nursing and one in medicine) auspiced through the University Of Melbourne (The Centre for Palliative Care) and one in medicine auspiced through Monash University. These services provide education for the community and health professionals and conduct research specific to the palliative care area. In addition, a Palliative Care Unit has been established at La Trobe University. This unit provides health promotion education and training, community development, direct service and research for clinical palliative care and related service providers throughout Victoria. 6. Other services that receive Palliative Care Program funding Palliative Care Victoria develops and provides information to help people living with life-threatening illnesses and their families and supports palliative care providers and workers in their provision of high quality palliative care.   Source: http://www.health.vic.gov.au/palliativecare/what.htm

3. Palliative Care Decision Making Groups Role Statements

The attached role statements have been developed as part of stage one of the palliative care decision making groups project. The role statements, outline the roles, responsibilities, relationships and structure of palliative care consortia, the palliative care advisory committee, statewide services and academic units (palliative care decision making groups). The role statements are intended to be clear, consistent and achieve effective implementation of the Strengthening Palliative Care policy.

It is important that all decision making groups are clear about their role in implementing the Strengthening Palliative Care policy. Palliative care decision making groups, and particularly palliative care consortia, are key drivers in implementing the policy. Regional plans developed by consortia should ensure the implementation of the policy principles in that region. The role of palliative care decision making groups will be especially important in the upcoming evaluation and refresh of the Strengthening Palliative Care policy.

Extensive consultation was undertaken with palliative care decision making groups in developing these role statements. All Department of Human Services (DHS) funded palliative care decision making groups are required to incorporate these role statements into their work from 2008, noting that not all aspects of the role statements are mandatory. The role statements will be reviewed in August 2010.

For the purpose of developing and implementing these role statements, DHS funded palliative care decision making groups and services are defined as those which receive funding from the Cancer and Palliative Care Unit. The DHS funded decision making groups and services include all palliative care consortia and statewide palliative care services, most of the palliative care academic units, all community palliative care services, inpatient palliative care services and palliative care consultancy services.

Stage two of the project commenced in October 2008. The aim of stage two is to develop strategies to achieve a consistently sound approach to decision making. In order to achieve this DHS will work with decision making groups to:

• assess current decision making skills and knowledge against current good practice models
• determine any gaps in decision making skills and knowledge, including succession planning, which need to be addressed
• make recommendations for addressing these gaps.

 Source:  http://www.health.vic.gov.au/palliativecare/archive/role-statements.htm

 4. Palliative Care in Cancer

1. What is palliative care?

   Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. The goal of palliative care is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to the related psychological, social, and spiritual problems. The goal is not to cure. Palliative care is also called comfort care, supportive care, and symptom management.

2. When is palliative care used in cancer care?

   Palliative care is given throughout a patient’s experience with cancer. It should begin at diagnosis and continue through treatment, follow-up care, and the end of life.

3. Who gives palliative care?

   Although any medical professional may provide palliative care by addressing the side effects and emotional issues of cancer, some have a particular focus on this type of care. A palliative care specialist is a health professional who specializes in treating the symptoms, side effects, and emotional problems experienced by patients. The goal is to maintain the best possible quality of life.

   Often, palliative care specialists work as part of a multidisciplinary team to coordinate care. This palliative care team may consist of doctors, nurses, registered dieticians, pharmacists, and social workers. Many teams include psychologists or a hospital chaplain as well. Palliative care specialists may also make recommendations to primary care physicians about the management of pain and other symptoms. People do not give up their primary care physician to receive palliative care.

4. If a person accepts palliative care, does it mean he or she won’t get cancer treatment?

   No. Palliative care is given in addition to cancer treatment. However, when a patient reaches a point at which treatment to destroy the cancer is no longer warranted, palliative care becomes the total focus of care. It will continue to be given to alleviate the symptoms and emotional issues of cancer. Palliative care providers can help ease the transition to end-of-life care.

5. What is the difference between palliative care and hospice?

   Although hospice care has the same principles of comfort and support, palliative care is offered earlier in the disease process. As noted above, a person’s cancer treatment continues to be administered and assessed while he or she is receiving palliative care. Hospice care is a form of palliative care that is given to a person when cancer therapies are no longer controlling the disease. It focuses on caring, not curing. When a person has a terminal diagnosis (usually defined as having a life expectancy of 6 months or less) and is approaching the end of life, he or she might be eligible to receive hospice care. More information is available in the National Cancer Institute (NCI) fact sheet Hospice at http://www.cancer.gov/cancertopics/factsheet/Support/hospice on the Internet.

6. Where do cancer patients receive palliative care?

   Cancer centers and hospitals often have palliative care specialists on staff. They may also have a palliative care team that monitors and attends to patient and family needs. Cancer centers may also have programs or clinics that address specific palliative care issues, such as lymphedema, pain management, sexual functioning, or psychosocial issues.

   A patient may also receive palliative care at home, either under a physician’s care or through hospice, or at a facility that offers long-term care.

7. How does a person find a place that offers palliative care?

   Patients should ask their doctor for the names of palliative care and symptom management specialists in the community. A local hospice may be able to offer referrals as well. Area hospitals or medical centers can also provide information. In addition, some national organizations have specific databases for referrals. For example, the Center to Advance Palliative Care has a list of providers by state at http://www.getpalliativecare.org/providers on the Internet. The National Hospice and Palliative Care Organization’s Web site also has a list of providers at http://www.nhpco.org on the Internet.

8. What issues are addressed in palliative care?

   Palliative care can address a broad range of issues, integrating an individual’s specific needs into care. The physical and emotional effects of cancer and its treatment may be very different from person to person. For example, differences in age, cultural background, or support systems may result in very different palliative care needs.

   Comprehensive palliative care will take the following issues into account for each patient:

   • Physical. Common physical symptoms include pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia. Many of these can be relieved with medicines or by using other methods, such as nutrition therapy, physical therapy, or deep breathing techniques. Also, chemotherapy, radiation therapy, or surgery may be used to shrink tumors that are causing pain and other problems.
     
     
   • Emotional and coping. Palliative care specialists can provide resources to help patients and families deal with the emotions that come with a cancer diagnosis and cancer treatment. Depression, anxiety, and fear are only a few of the concerns that can be addressed through palliative care. Experts may provide counseling, recommend support groups, hold family meetings, or make referrals to mental health professionals.
     
     
   • Practical. Cancer patients may have financial and legal worries, insurance questions, employment concerns, and concerns about completing advance directives. For many patients and families, the technical language and specific details of laws and forms are hard to understand. To ease the burden, the palliative care team may assist in coordinating the appropriate services. For example, the team may direct patients and families to resources that can help with financial counseling, understanding medical forms or legal advice, or identifying local and national resources, such as transportation or housing agencies.
     
     
   • Spiritual. With a cancer diagnosis, patients and families often look more deeply for meaning in their lives. Some find the disease brings them more faith, whereas others question their faith as they struggle to understand why cancer happened to them. An expert in palliative care can help people explore their beliefs and values so that they can find a sense of peace or reach a point of acceptance that is appropriate for their situation.
     
     

9. Can a family member receive palliative care?

   Yes. Family members are an important part of cancer care, and, like the patient, they have a number of changing needs. It’s common for family members to become overwhelmed by the extra responsibilities placed upon them. Many find it difficult to care for a relative who is ill while trying to handle other obligations, such as work and caring for other family members. Other issues can add to the stress, including uncertainty about how to help their loved one with medical situations, inadequate social support, and emotions such as worry and fear. These challenges can compromise their own health. Palliative care can help families and friends cope with these issues and give them the support they need.

10. How is palliative care given at the end of life?

    Making the transition from curative treatment to end-of-life care is a key part of palliative care. A palliative care team can help patients and their loved ones prepare for physical changes that may occur near the end of life and address appropriate symptom management for this stage of care. The team can also help patients cope with the different thoughts and emotional issues that arise, such as worries about leaving loved ones behind, reflections about their legacy and relationships, or reaching closure with their life. In addition, palliative care can support family members and loved ones emotionally and with issues such as when to withdraw cancer therapy, grief counseling, and transition to hospice. For more information, see the NCI PDQ® information summary Last Days of Life at http://www.cancer.gov/cancertopics/pdq/supportivecare/lastdays on the Internet.

11. How do people talk about palliative care or decide what they need?

    Patients and their loved ones should ask their doctor about palliative care. In addition to discussing their needs for symptom relief and emotional support, patients and their families should consider the amount of communication they need. What people want to know about their diagnosis and care varies with each person. It’s important for patients to tell their doctor about what they want to know, how much information they want, and when they want to receive it.

12. Who pays for palliative care?

    Palliative care services are usually covered by health insurance. Medicare and Medicaid also pay for palliative care, depending on the situation. If patients do not have health insurance or are unsure about their coverage, they should check with a social worker or their hospital’s financial counselor.

13. Is there any research that shows palliative care is beneficial?

    Yes. Research shows that palliative care and its many components are beneficial to patient and family health and well-being. A number of studies in recent years have shown that patients who have their symptoms controlled and are able to communicate their emotional needs have a better experience with their medical care. Their quality of life and physical symptoms improve.

    In addition, the Institute of Medicine 2007 report Cancer Care for the Whole Patient cites many studies that show patients are less able to adhere to their treatment and manage their illness and health when physical and emotional problems are present. To view this report, go to http://www.iom.edu/Reports/2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx on the Internet.

    Furthermore, patients who have serious illnesses and receive palliative care consultations have lower hospital costs than those who don’t. These consultations help determine treatment priorities and, therefore, help patients avoid unnecessary tests and procedures. (For more information, go to http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_090908/page3 on the Internet.)
    
    

14. Does NCI support palliative care research?

    Yes. NCI supports a number of projects in the area of symptom management and palliative care. Clicking the following links online will launch real-time searches of NCI’s list of cancer clinical trials for supportive and palliative care that are currently enrolling participants. The search results can be further narrowed by trial location, drug name, intervention type, and other criteria.

    • Behavorial and psychological supportive care trials
    • Educational and training supportive care trials
    • All supportive and palliative care trials

    General information about cancer clinical trials is also available on NCI’s Clinical Trials Home Page at http://www.cancer.gov/clinicaltrials on the Internet.

    In addition, NCI’s Office of Cancer Survivorship sponsors research that addresses symptom management for patients and families who have completed treatment. For a list of funded studies, go to http://cancercontrol.cancer.gov/ocs/portfolio.asp on the Internet.

    Moreover, NCI’s Community Clinical Oncology Program (CCOP) sponsors a number of clinical trials that are designed to treat many cancer-related symptoms. These symptoms include nausea and vomiting, fatigue, peripheral neuropathy, pain, and sleep problems. Trials that are designed to prevent symptoms are also listed. For more information, go to http://prevention.cancer.gov/programs-resources/programs/ccop on the Internet. These clinical trials will be included in the search results obtained using the links above.

Source  http://www.cancer.gov/cancertopics/factsheet/Support/palliative-care

Library      

http://www.nursingethics.ca/

LWN751: 3354: End-of-Life Health Care: What it Takes                                                  
LWN761: 4740: Advance Directive: Planning Issues   

LWH300: 2806: Mind and Body: A Relaxed Attitude
LWH301: 1528: Spiritual Health: Serving the Whole Person
LWH305: 3062: Health and Spirituality
LWH311: 2228: Healing Meditation: A Way of Stress Reduction   

LWH701: 1530: Aging Safely: Self-care in a Healthy Environment
LWH710: 2266: Alzheimer's Disease: Toward Prevention
LWH721: 1760: Facing Loss: Healing of Acute Grief

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