Palliative Care is about
improving quality of life
and living. You are the most
important part of the care
we provide – if we are not
doing something right,
please let us know.
https://www.petermac.org/sites/default/files/media-uploads/00222_Flyer_A4_Patient_Info_PALLIATIVE_CARE_FINAL_160728.pdf
Is Palliative Care the same as Hospice Care?
Yes, the principles are the same.
- hospice means different things in different countries—it is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life
- it is better to adopt and use the term palliative care
ETHICAL ISSUES AT THE END OF LIFE
- AUTONOMY—The patient’s right to self-determination
Dokter harus mendorong dialog tentang perawatan akhir hidup dan penggunaan arahan lanjut sehingga otonomi dapat dipertahankan bahkan jika kapasitas pengambilan keputusan pasien hilang.
- BENEFICENCE—Doing what is good or beneficial for the patient
Dokter harus melakukan apa yang mereka yakini sebagai kepentingan terbaik pasien, tetapi tindakan ini tidak boleh bertentangan dengan hak pasien untuk menentukan nasib sendiri.
- NONMALEFICENCE—Avoidance of infliction of intentional harm
Banyak dokter melihat partisipasi dalam bunuh diri yang dibantu dokter sebagai pelanggaran prinsip ini.
- JUSTICE—Fairness in the delivery of healthcare
Dokter harus mengadvokasi untuk perawatan pasien sekarat mereka yang adil dan tanpa diskriminasi.
- FIDELITY—Truthfulness and faithfulness in delivering healthcare
Dokter harus jujur kepada pasien sekarat mereka mengenai diagnosis dan prognosis dan mengadvokasi keinginan pasien sekarat mereka bahkan ketika kapasitas pengambilan keputusan pasien telah hilang.
Source:
JAOA • Vol 101 • No 10 • October 2001 • 617
https://www.scribd.com/document/448974599/Ethical-Issues-at-the-End-of-Life
JAOA • Vol 101 • No 10 • October 2001 • 617
https://www.scribd.com/document/448974599/Ethical-Issues-at-the-End-of-Life
All NICE products on end of life
https://pharmacopallcare.blogspot.com/2020/09/all-nice-products-on-end-of-life-ika.html
The IAHPC Manual of Palliative Care 3rd Edition
Is Palliative Care the same as Hospice Care?
Yes, the principles are the same.
- hospice means different things in different countries—it is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life
- it is better to adopt and use the term palliative care
These medicine guidelines were developed for inpatient use by the Waitemata DHB Hospital Palliative Care Team, and the Pharmacy at North Shore Hospital. The guides have been endorsed by the Waitemata DHB Pharmacy and Therapeutics Committee.
https://www.waitematadhb.govt.nz/health-professionals/medicines/palliative-care-guidelines/
For someone who is in the last days of life, advise the person and carer that:
- Clinically assisted hydration may relieve distressing symptoms or signs related to dehydration but may cause other problems such as fluid overload.
- It is uncertain if giving clinically assisted hydration will prolong life or extend the dying process.
- It is uncertain that if clinically assisted hydration is not given, death will hasten.
Characteristics of a good death
- ☛ Being treated as an individual
- ☛ Dignity
- ☛ Respect
- ☛ Without pain
- ☛ Without other symptoms
- ☛ Death in familiar surroundings (eg, home)
- ☛ Close family/friends are present at time of death
- ☛ Healthcare professionals are involved in end-of-life care prior to/at time of death
- ☛ System recognition that a good death is a result of providing quality end-of-life care
- ☛ Healthcare professionals involved in delivering care prior to/at time of death, including timely identifying the end of life
- ☛ Care is holistic and involves different disciplines/professionals
- ☛ Informal care is involved (families/friends)
- ☛ Care requires teamwork
- ☛ Care requires coordination
- ☛ Pain and symptom management
- ☛ Care of the body after death
- ☛ Care is accessible to people when they need it during the period of their dying
- ☛ Bereavement support
- ☛ Care provided with compassion, dignity and respect trajectory (hours, days, months, year)
- ☛ End-of-life care is suitably resources in order to be accessible
- ☛ Preferred place of death is ascertained and care organised around this
- ☛ Services provide support for home deaths
- ☛ Dying and death is planned for, including using advance care planning
- ☛ Patient choice is sought and is used as a driver for care delivery
- ☛ Healthcare professionals promote awareness and acceptance of dying
- ☛ Open communication in al areas of care, including between family and dying person
- Hospice palliative (say "PAL-lee-uh-tiv") care is the field of medicine that helps give you more good days by providing care for those quality-of-life issues. It includes treating symptoms like pain, nausea, or sleep problems. But it can also include helping you and your loved ones to:
- Understand your illness better.
- Talk more openly about your feelings.
- Decide what treatment you want or don't want.
- Communicate better with your doctors, nurses, and each other.
- In many parts of Canada, hospice care and palliative care are known as hospice palliative care. But there are differences between them, depending on the range of services they offer.
For good early palliative care we have to:
- Identify an early trigger when this approach might be started.
- Chat with the patient and carer to explain the likely course or trajectory of the illness and understand their goals in the light of this.
- Make a plan together with the patient and carer, hoping for the best, but planning for the worse, accepting the inherent uncertainty.
- Communicate the plan with everyone who might be involved.
Palliative care teams improve quality of care in a manner that leads to reduced hospital costs. They achieve this by combining:
- → Time to devote to intensive family meetings and patient/family counseling.
- → Skilled communication on what to expect in the future in order to ensure that care is matched to the goals and priorities of the patient and the family.
- → Expert symptom management of both physical and emotional distress.
- → Coordination and communication of care plans among all providers and across settings.
Intended Beneficial Outcomes
- All people receive timely, quality care in the appropriate setting, in accordance with their assessed needs and in consultation with them, their families and carers.
- Care is delivered in accordance with quality and safety standards.
- All people are assessed using common assessment tools that identify needs particular to their end of life care.
- Cultural, spiritual and other values of patients, their families and carers are respected.
- Partnerships with Aboriginal stakeholders (including Aboriginal Community Controlled Health Services) are fostered to address the health needs and interests of Aboriginal people.
- Patients’ pain and or other physical symptoms will be effectively controlled.
- Psycho-social and spiritual support is available and offered.
- Access to grief and bereavement support is available and offered.
- Patients, families and carers are provided with appropriate equipment to ensure a safe home environment.
- The Merriam-Webster Dictionary defines spiritual as “of, relating to, consisting of, or affecting the spirit” or, alternatively, “concerned with religious values.”
- Religion is defined as “a personal set or institutionalized system of religious attitudes, beliefs, and practices.”
- Although persons who are religious may consider themselves spiritual, there are many who consider themselves spiritual but not religious.
Supporting a person’s spiritual needs
- ☛ Allow the person to guide all spiritual interventions.
- ☛ Provide a supportive presence and avoid judgment.
- ☛ Coordinate spiritual services and people; for example, arrange access to chaplains or pastoral care workers, family, carers and friends as requested by the person.
- ☛ Ensure access to spiritual activities such as prayer times, Bible study and worship ceremonies.
- ☛ Obtain requested items for spiritual practice such as books, rosaries, statues.
- ☛ Avoid interrupting a person during spiritual activities.
- ☛ Help people accessing the service to celebrate specific religious events such as Ramadan, Good Friday or Rosh Hashanah.
- ☛ Encourage any pre-death rituals the client may wish to follow.
- ☛ Follow spiritual beliefs in regard to medical treatment; for example, some beliefs may forbid a blood transfusion.
PALLIATIVE CARE AND SPIRITUALITY
https://pharmacopallcare.blogspot.com/2020/09/palliative-care-and-spirituality-ika_26.html
EDMONTON SYMPTOM ASSESSMENT SYSTEM (ESAS-r)
Recognising that someone is entering their last year of life benefits us all.
- The patient and their carers have time to deal with the news and realign their priorities
- The patient is less likely to be subject to treatments of limited clinical value
- You can plan appropriate end of life care rather than deal with a series of crises
- Well-organised community support can halve the cost of hospital admission and result in 70% of people realising their choice to die at home – over twice the number in the general population.
https://www.dyingmatters.org/gp_page/identifying-end-life-patients
- 1. Depression and anxiety are common in cancer patients. A large Scottish study showed major depression in 13% of lung cancer patients. Depression was more common in younger patients and those with high social deprivation.
- 2. The PHQ-9 is a useful screening tool for depression and the brief Edinburgh Depression Scale is suited to palliative care patients. The widely used Hospital Anxiety and Depression Score has a strong focus on physical symptoms and may be less useful in palliative patients.
- 3. Fatigue due to disease may mask lack of motivation and appetite due to depression, and a trial of antidepressants should be considered if prognosis allows.
- 4. The use of antidepressants should be considered on an individual basis. Systematic review has failed to demonstrate clear superiority of any individual antidepressant over placebo therefore the choice of drug is based on the data in the general population. Data on medically ill patients suggest a positive safety profile for the SSRIs.
- 5. Remember risk of serotonin syndrome where patients are on multiple medications in addition to a SSRI. Tramadol may be a particular risk.
- 6. Where neuropathic pain is an issue as well as depression an SNRI such as Duloxetine or Venlafaxine is often used as the antidepressant of choice.
- 7. Mirtazapine 15mg has a paradoxically more sedative effect than the higher doses and is likely to be sub-therapeutic for treatment of depression. It is relatively well tolerated by the elderly and those with heart failure.
- 8. In mild depression, psychological support can be as effective as medication and adequate pain control may significantly improve depressive symptoms.
- 9. Diazepam may accumulate over a few days, so use should be carefully monitored. Once daily dosage is often adequate. Try not to use different benzodiazepines concurrently.
- 10. Lorazepam acts quickly, can be given sublingually, and has a relatively short half-life. It is particularly useful for anxiety related to physical symptoms such as breathlessness and pain.
https://www.macmillan.org.uk/_images/ten-tips-anxiety-depression-palliative-care_tcm9-300173.pdf
SUBSTITUTE DECISION MAKER
A Substitute Decision Maker
is appointed according to the following heirarchy:
☛ Power of Attorney
☛ Spouse (living together in a married or common-law relationship)
☛ Parent or child
☛ Siblings
☛ Other relatives
https://www.lhsc.on.ca/critical-care-trauma-centre/what-is-a-substitute-decision-maker
