- Directly – to
provide direct management and support of patients and families/whānau
where more complex palliative care need exceeds the resources of the
generalist provider.
Specialist palliative care involvement with any patient and the family can be continuous or episodic depending on the changing need. Complex need in this context is defined as a level of need that exceeds the resources of the generalist team – this may be in any of the domains of care – physical, psychological, spiritual, etc.
- Indirectly – to provide advice, support, education and training of other health professionals and volunteers to support the generalist provision of palliative care provision.
What is death and dying?
☛ Death means your body shuts down and stops working.
☛ Death is a part of life.
☛ Everyone will die.
☛ Everyone will know someone who dies.
☛ People can die at any age.
☛ Some people die when they are young.
www.health.nsw.gov.au☛ Death is a part of life.
☛ Everyone will die.
☛ Everyone will know someone who dies.
☛ People can die at any age.
☛ Some people die when they are young.
- The EAPC also recommends that sedative use for imminently dying patients should be regularly monitored, with patient comfort being the primary parameter, if this is the aim. All records examined for patients receiving CSCI midazolam demonstrated monitoring of patient comfort, with no evident differences in approach between dosage levels.ps-pc01.pdf
- The EAPC position paper states that euthanasia is not a part of palliative care. Certainly, even the best palliative care model or service cannot prevent patients sometimes asking for hastened death. However, there is a fundamental difference in the approach to these patients between euthanasia and palliative care. Proponents of the legalization of euthanasia take the request of the patient as the point of reference of the patient’s autonomy and try to comply with this personal preference. Palliative care experts should also acknowledge the requests for euthanasia in those patients who express them, but make this the starting point of holistic care, beginning with comprehensive assessment and communication and trying to understand the motivation and attitude behind the patient’s wish.ps-pc02.pdf
- Ethical dilemmas associated with sedation in end-of-life care can be usefully illuminated by carefully designed empirical studies enabling international comparisons.ps-pc03.pdf
- Initiating PS without palliative medicine involvement is potentially hazardous. Palliative medicine consultation has been demonstrated to elicit previously undocumented diagnoses (especially delirium), ands uggest multiple management strategies in advanced cancer, even within tertiary cancer centers. A dilemma in decision making arises where there is a lack of accessto, or awareness of, specialized interventions including palliative medicine, psychiatry, interventional pain management, and spiritual care. Non-palliative medi-cine physicians need to have insight into their own therapeutic limitations, whilst palliative medicine physicians should be available to provide support via telephone or video conference to isolated clinicians.ps-pc04.pdf
- Key recommendations of this framework are that palliative sedation is potentially indicated for patients with intolerable distress resulting from refractory symptoms, and who have an expected prognosis of hours or days at most.ps-ps05.pdf
“Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers”.
- "Some ways of opening up a discussion about deteriorating health"
- "What do you know about your health problems and what do you think might happen in future?"
- "If you did get more unwell, what would be the most important things for you and your family?"
- "Is there anything that is particularly important for you or your family that we should know about?"
- "Sometimes people choose some family members or close friends to make decisions for them if they get less well……Is that something you’ve thought about? Have you talked to your family/ friends about it?"
- "I am glad you feel better and I hope you will stay well, but I am worried about what might happen if …………"
- "Can we talk about how we might cope with not knowing exactly what will happen and when? What would be the best way for us to talk about that?"
- "I wish we had more treatment for…..could we talk about what we can do if that is not possible/ is not going to help you?"
Why use SPICT™?
SPICT™ is a clinical tool used by health and care professionals around the world. SPICT™ helps identify people with general indicators of poor or deteriorating health, and one or more advanced, conditions or a new serious illness. SPICT™ looks for changes in health status, and increasing care and support needs.
Many people (particularly with organ failure, frailty or multimorbidity) can benefit from well-coordinated care planning and earlier palliative care integrated with the best available treatment of underlying illnesses.
https://www.spict.org.uk/usingspict/
Download guide why using SPICT™
Anticipatory in Palliative Care
https://bit.ly/AnticipatoryinPalliativeCare
https://diigo.com/0huc0x
- "People welcome opportunities to discuss their future health and care with professionals but will struggle if they are expected to participate in making explicit advance care plans for situations they cannot relate to or about unknown future circumstances.
- When people are told that their health is deteriorating, they become more distressed if their fears about how to handle an uncertain future are not addressed during discussions about treatment and care.
- Calls for more realistic medicine aim to reduce burdensome interventions that are of little benefit and not in line with people’s preferences.
- This depends on professionals, people living with advanced illnesses, and the wider community developing new ways of exchanging knowledge, perspectives, and information and embracing a degree of uncertainty."
Palliative care not only improves the quality of life of patients and their families, reducing mental and physical distress and discomfort, but also can help patients live longer. The prolonged survival is thought to be due to improved quality of life, appropriate administration of disease-directed treatments, and early referral to hospice for intensive symptom management and stabilization.
Use this discussion and the resulting services as an opportunity to:
https://www.health.harvard.edu/
- Assess and manage poorly controlled physical, psychological, social, and spiritual stressors.
- Understand your illness, its expected trajectory, and treatment options.
- Explore your hopes, worries, goals, and values; cultural or religious beliefs that impact your care or treatment decisions; treatments you may or may not want; what quality of life means to you.
- Discuss and document your health care proxy and end of life preferences, including medical interventions you do or do not want.
https://www.health.harvard.edu/
“Perawatan paliatif adalah perawatan holistik aktif individu di segala usia dengan penderitaan serius yang berkaitan dengan kesehatan karena penyakit parah, dan terutama mereka yang mendekati akhir kehidupan. Ini bertujuan untuk meningkatkan kualitas hidup pasien, keluarga mereka dan pengasuh mereka ”.
One month after its launch on 18 December 2018, just 700 palliative care activists around the world had endorsed the new definition.
http://endoflifestudies.academicblogs.co.uk/controversies-in-palliative-care-a-matter-of-definition/Why do we Need End-of-Life (EOL) Decisions?
There are many situations when patients with irreversible or end-stage diseases (where there is very little chance of recovery) remain, on assisted ventilation for days, weeks or months. This is associated with several conflicts:
- 1. This results in prolongation of ‘vegetative life’ that may be a source of misery for everyone, especially for the patient and the family.
- 2. There is a lowering of ‘dignity of death’ due to futile invasive procedures and unnecessary treatment.
- 3. There may not be any chance of improvement or survival leading to wastage of resources.
- 4. It may be a significant burden for the family or society–physically, financially and psychologically.
- 5. There may be situation where limited resources may be denied to a more ‘deserving salvagable individual’ because they are ‘in use’ for a vegetative individual.
- 6. In some specific situations, there may be need for withdrawing assisted respiratory support; e.g., in cases of brain-stem death that is certified by a board of medical experts.
In spite of the above situations – which happen quite frequently, especially in intensive care unit (ICU) set-up, cancer patients and in some irreversible chronic conditions – there are no legal guidelines in our country regarding withdrawal of care or EOL decisions. There is also no guideline regarding not to initiate resuscitation in conditions where life may not be meaningful after resuscitation.
https://www.indianpediatrics.net/oct2017/oct-851-859.htm
Specialist palliative care (SPC) has expanded since it’s origins and not only supports patients where required at end of life but also supports symptom control in potentially life-limiting conditions. The emphasis of the speciality has always been on holistic care of the patients. Patients may be referred with any life-limiting condition, be that a form of cancer or non-cancer.
https://www.gloshospitals.nhs.uk/our-services/services-we-offer/end-life-palliative-care/
Recognising Where Death is Imminent – The ‘Terminal’ Phasehttp://www.wmcares.org.uk/wmpcp/guide/corticosteroids/withdrawal/
- Dexamethasone may be given by infusion but may need to be given in a separate syringe driver/pump or as a stat subcutaneous dose depending on volume. If volume of a stat injection of dexamethasone would be more than 2ml, then the same injection can be split between two different sites e.g. left arm and right arm to allow more comfortable once daily administration.
- It may be appropriate to stop corticosteroids in the last days of life unless they have been essential in achieving good symptom control for the patient e.g. to manage headaches, seizures or pain.
There are a number of signals indicating that a patient is actively dying. It is likely that a patient with advanced incurable cancer with significant deterioration over recent weeks or months is entering into the dying phase when they have been deteriorating over a period of weeks or months and when two of the four criteria listed below apply.
The patient is:
- ☛ Bed bound
- ☛ Semi-comatose
- ☛ Only able to take sips of fluids
- ☛ No longer able to take oral medication
General Predictors of End Stage Disease
- ☛ Weight loss >10% over 6 months
- ☛ General physical decline
- ☛ Serum albumin <25g/l
- ☛ Dependence in most activities of daily living (ADLs)
- ☛ Reducing performance status e.g. spending more than 50% of time in bed.
Terminal agitation, also referred to as terminal restlessness, is a common symptom in dying patients. Terminal agitation is typically seen during the hours or days before death and can be distressing and overwhelming for caregivers.
Physical Signs:
☛ Constant motion such as:
- Tossing and turning
- Trying to get out of bed
- Pulling at clothing and blankets
- Fidgeting
- Pacing
☛ Striking out by hitting or kicking
☛ Yelling out
☛ Muscle twitching
Behavioral Signs:
☛ Increased confusion
☛ Inability to concentrate or follow conversations
☛ Irritability
☛ Mumbling, incoherent speech
☛ Hallucinations
For caregiving tips visit www.HospiceofCincinnati.org/for-the-caregiver.
"Saya mempersiapkan diri bertemu Allooh, yang mana berakhir pada tempat yang paling baik". (Muhammad Ali)
Ooookay kan, Bro!
