2IntroductionWe have experienced and will continue to experience deaths of those we support. We need to have a basic understanding of palliative care in order to determine when it is the most appropriate type of care.This power point will look at:the essential elements of palliative caredifferences and similarities of the palliative care and disability sectorsquality of lifethe usual composition of a palliative care team
3A Story From L’ArchePaul was in his mid-twenties. In addition to being developmentally disabled and a victim of strokes, he was a hemophilic whose blood transfusion had led to his contracting aids. Despite his many afflictions, Paul faced his approaching death serenely. About two weeks before his death two of us were sitting at Paul’s bedside and I asked him if he was okay. “Okay?” he responded, and looking at the assistant by his side asked, “Do you love me?” she was startled but replied that she did love him – that the care she gave him was a sign of her love. Turning to me, Paul asked “Does God love me?” I answered him that God loved him. Then Paul said: “Well, if you love me and God loves me, I’m okay.” From Flowers of the Ark
4Critical Elements of Palliative Care These are taken from the Health and Welfare Canada, Palliative Care Services Guidelines, Ottawa, 19891) Death is seen as a natural part of life and is acknowledged rather than seen as a failure or something which must always be fought against to the very end.
52)The unit of care is both the patient and the loved ones; although death is personal, its meaning and impact are wider. The family must be integrally included in planning and care.
63. Palliative care upholds the basic dignity and worth of humankind whether living or dying. People who are dying are still living and have the right to be in control of their lives, including refusal of treatment or the continuation of it.
74. The primary intent of care is palliative or “comfort oriented” 4. The primary intent of care is palliative or “comfort oriented”. The relief of distressing symptoms, especially physical is paramount.
85. The needs of the terminally ill are often diverse and best met by a variety of skills from professional disciplines, volunteers and the family.
96. Coordination and consistency of care are essential among the disciplines and between facilities.
107. Creation of “home” – wherever that may be is necessary for proper care.
118. Grief support for the family (loved ones) following death is an essential part of care for the dying.
129. Support for caregivers is essential to their ability to continue to continue working effectively in an area of pain, death and loss.
13Similarities in the Disability Service Model and the Palliative Care Model BOTHare person centered.recognize that team is important.know that good communication can improve quality of life.put us in front of ethical questionsprovide opportunities to advocate for the person receiving servicesencourage control/choice by the person receiving services.
14Some differencesPalliative Care will likely involve more medical care than is usual in the disability sector.People will not likely learn new skills when receiving palliative care but will spend more time and energy maintaining independence and integrating one’s life experiences.Palliative care may require more partnering with other agencies than before.
15More differencesEthical questions will be more significant as we need to make choices around end of life care particularly if it is difficult to know the disabled person's wishes.The team providing palliative care will usually be larger than teams in the disability sector.Quality of life issues will likely come more into focus when providing palliative care even though they are already significant in the disability sector.
16Definitions of Quality of life Quality of life is someone’s satisfaction or happiness in life in the areas that they consider important.from Positive Approaches to Palliative CareWell being as defined by each individual. It relates to experiences that are meaningful and valuable to the individual and his/her capacity to have such experiences.from a consensus Model to Guide Hospice Palliative Care
17Some Questions to Consider What are the things that you consider add to your quality of life?Consider a person with an intellectual disability that you know well – what things might they think add to their quality of life?Is their much difference between the two?How might quality of life change as someone gets closer to death?
18People who may be part of the Palliative Care Team Person who is terminally illFamilyFriends (including others with an intellectual disabilitySupport workers/managers from the agencyFamily DoctorPalliative care Doctor and NursesOccupational TherapistSpeech and language therapistChaplain.
19Working TogetherIf a person with an intellectual disability is to get the best possible care, people in the disability sector who know the person well and people who provide palliative care, need to work closely together. The developmental sector does not always know about palliative care and those in palliative care may not understand the ways of communication and behaviors of those with intellectual disabilities.
20In the developmental sector we need to be aware that Staffing will need to be increased when providing care for someone who is dying.We may have strong relationships with people with intellectual disabilities and this may affect our ability to provide care positively or negatively.It should not be assumed that everyone is comfortable caring for someone who is dying.Each person needs to take responsibility for their own values, feelings, beliefs and experiences of death so that they do not negatively impact the person who is dying.
21Meeting the needs of the person who is Ill Pain and symptom management may be new and challenging. Pain can can be expressed in many ways.We may need to advocate for the dying person.There will also be spiritual, emotional and social needs that need to be addressed.It will be necessary to decide who will tell the person what about their illness
22Meeting the needs continued Religious and cultural practices and beliefs may be important to a dying person so we need to find out what these are in order to respect them.Each death is unique but the process of dying does have some common patterns. It is important to be aware of these so they do not come as big surprises or cause more concern than necessary.
23At the time of the DeathHopefully there will be clear policies and procedures in place for the team to follow.Death usually feels like a shock even if it is expected.Look after yourself and those around you the best you can but know that extra support will probably be needed.
24Remember Dying is a core experience of our life’s journey Dying is painful yet transformationalDying takes place within relationships of mutuality.In L’Arche we try to face death and walk with our brothers and sisters as they live their journey of dying. We believe that dying is a phase of life where each person’s gifts can be further revealed when he/she is held well by a caring community.
25ResourcesContact your local palliative care/ hospice providers for support. They should have someone that specializes in pain and symptom management.Use local grief and bereavement services afterwards if it seems they would be helpful.