- To allow the patient to die comfortably
- To support the family/carers and to start to prepare them for bereavement
- To discontinue any burdensome or irrelevant clinical procedures.
Symptom control at the end of life, what about palliative sedation?https://t.co/k52sqVsPlu pic.twitter.com/37f9xScEyI
— Ika Syamsul Huda MZ, MD, MPH (@drikasyamsul) July 3, 2021
Today’s consensus statement sets out principles of care that put the patient first, considers values and wishes and recognises the importance of training in palliative care.
POLST: Portable Medical Orders, or POLST for short.
POLST communicates your wishes as medical orders
A POLST form tells all health care providers during a medical emergency what you want:
“Take me to the hospital” or “I want to stay here”
“Yes, attempt CPR” or “No, don’t attempt CPR”
“These are the medical treatments I want”
“This is the care plan I want followed”
https://web.archive.org/web/20210114100815/https://polst.org/
The Global Atlas of Palliative Care at the End of Life,
quick stats:
☛ Over 40 million patients each year need palliative care, including 20 million at the end of life.
☛ Less than 10% of people receive palliative care relative to the need.
☛ Children represent 6% of the need.
☛ 69% of people requiring palliative care are aged over 60 years
☛ The unmet need for palliative care is greatest in low and middle-income countries (80%).
☛ Those dying from non‐communicable diseases represent 90% of the burden of end of life palliative care.
☛ Only 20 countries have palliative care well integrated into their healthcare systems.
☛ 42% of countries have no identified hospice and palliative care service.
General practitioners (GPs) can use a proactive, systematic approach to anticipate and provide person-centred care to the end of life and a ‘good death’ by:Resuscitation Planning Policy Framework and toolkit
https://bit.ly/2Wx8TWq
- initiating advance care planning early to document patient wishes and directives
- anticipating and assessing escalating palliative care needs early along the illness trajectory
- establishing clinical care goals and treatment decisions with the patient/medical decision maker
- reviewing clinical care plans frequently to address symptoms and physical, psychosocial and spiritual/existential issues
- coordinating and participating in the provision of team-based end-of-life care.
Policy Directive – Resuscitation Planning- 7 Step Pathway - outlines the requirements for SA Health employees to provide a standardised, patient-centred, best practice approach to planning for resuscitation and other care for an adult patient who is at end-of-life.
https://bit.ly/3dMXMOM
Clinical Use: Although there is no known published data assessing the effectiveness of utilizing the illness trajectories as a clinical teaching tool, describing or even diagramming these illness trajectories with patients and families may be a concise communication technique to set expectations and offer guidance regarding the anticipated impact of chronic illness on daily life. Clinicians should be aware of the significant variability in the medical literature regarding the validity of these illness trajectories as well as the limitations in the way functional decline is measured between studies. Therefore, it is vital that illness trajectories be reevaluated as the condition evolves. In particular, certain patterns such as an abrupt functional decline or frequent hospitalizations may indicate the need to readdress goals of care.
https://www.mypcnow.org/fast-fact/illness-trajectories-description-and-clinical-use/
Supportive measures for minimizing suffering due to the disease or the therapy should be implemented according to the patient needs.
Supportive measures may include:
- – Relief of respiratory symptoms: oxygen should be used to alleviate shortness of breath; corticosteroids (prednisolone) are beneficial in severe respiratory insufficiency; codeine helps control cough.
- – Identification, assessment and treatment of pain: according to the standard recommendations (non opioids/mild opioids/strong opioids adapted to the level of pain).
- – All necessary ancillary medications needed should be used.
- – Patients with poor nutritional status should receive nutritional support.
- – In debilitated patients, important measures for making patients comfortable and preventing complications must be taken. Regular scheduled movement of the bedridden patients prevents bedsores. Bathing and oral care assistance keeps patients clean and comfortable, while preventing skin infections.
- – Disorders such as anxiety or depression due to prolonged sickness, separation from family, difficult living conditions, etc. should be addressed when present. The patient as well as the family may need support.
- – Potential social problems should also be addressed. When necessary, hospice-like care should be offered to families who want to keep the patient at home. Inpatient end-of-life care should be available to those for whom home care is not available.
Palliative Care from Diagnosis to Death
- Most nurses learn about the term “illness trajectory” at some point during their nursing program. In loose terms, trajectory means “course,” and therefore illness trajectory means “course of illness.” By understanding which type of illness trajectory a patient has, it will help to provide answers for two important and common questions many patients have: “How long do I have?” and “What will happen?” (Murray, Kendall, Boyd, & Sheikh, 2005).
- Although Glaser & Strauss were the first to identify trajectories of dying, much work has been done since their initial description. These trajectories can also be referred to as illness trajectories.
https://courses.lumenlearning.com/suny-nursing-care-at-the-end-of-life/chapter/types-and-variability-within-illness-trajectories/Using clinical profiles, Lunney et al. (2002) identified four groups representing EOL trajectories differing in duration and shape (Figure 1): sudden death, terminal illness, organ failure, and frailty.
https://academic.oup.com/psychsocgerontology/article/73/4/564/3938843
Care needs for different disease trajectories
Predictable trajectory—for example, for patients with cancer:
- ☛ Family support
- ☛ Symptom control
- ☛ Continuity of relationship
- ☛ Life closure
- ☛ Adaptability to rapid changes
Erratic trajectory—for example, for patients with organ system failure, heart failure, COPD, renal failure:
- ☛ Preplanning for urgent situations
- ☛ Life closure
- ☛ Prevention of exacerbations
- ☛ Decision making about benefits of low yield treatments
- ☛ Support at home
- ☛ Prepare family for “sudden death”
Long term gradual decline—for example, for patients with dementia and frailty:
- ☛ Endurance
- ☛ Long term home care service and supervision
- ☛ Helping carer to find meaning
- ☛ Avoiding unnecessary lingering
- ☛ Keeping skin intact
- ☛ Finding moments of joy and meaning for the patient
https://www.goldstandardsframework.org.uk/cd-content/uploads/files/Library%2C%20Tools%20%26%20resources/ABC%20Palliative%20Care.pdf
Anticipation of death opens the door for discussions of the expected nature of terminal decline and end-of-life preferences. The phase of Building a New Normal is prolonged as caregivers accept responsibility for comforting care through periods of marked functional decline.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756496/
Organ failure: A more erratic trajectory with punctuated periods of decline likely correlating with acute exacerbations. Each exacerbation may result in death but is often survived with gradual deterioration in health and functional status. Timing of death is less certain than in cancer. Perhaps as a result, patients with congestive heart failure (CHF) and chronic obstructive pulmonary disorder are more likely to die in the hospital and less likely to receive hospice services nor understand the likely progression of their illness. https://www.mypcnow.org/fast-fact/illness-trajectories-description-and-clinical-use/
End-of-life care must also serve those who become increasingly frail, even without a life-threatening illness
Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.
https://jamanetwork.com/journals/jama/fullarticle/196538
Consider a Palliative Care Consultation for Your Patient If:
- The care team, patient or family needs help with complex decision-making and determination of goals of care. Goals of care are derived when a medical professional has an open and guided discussion of:
- Uncertainty of prognosis
- Uncertainty of appropriateness of therapy options
- Uncertainty of end-of-life status and/or hospice appropriateness
- Divergent views over care exist. Here are some scenarios:
- The patient and/or family request care that team feels is ineffective and probably have unsuccessful outcomes.
- There are conflicts over DNR orders.
- There’s recognition of limited therapeutic impact of artificial nutrition and hydration in a cognitively impaired, seriously ill or dying patient.
- Family distress is resulting in possible impaired surrogate decision-making.
- There’s a presence of threshold situations that possibly predict of further decline:
- New diagnosis of life-limiting illness
- Declining function with decreased ability to complete activities of daily living
- Unrelenting, unexplained weight loss
- Hospital admission from long-term care facility
- These conditions are present:
- Metastatic cancer with failure of multiple regimens of treatment
- Neurologic complications of cancer
- Brain metastases
- Spinal cord compression
- Carcinomatous meningitis
- Advanced lung disease with frequent exacerbations
- Advanced cardiac disease requiring consideration of LVAD or IV pressors
- Advanced renal disease with deterioration despite dialysis
- Neurodegenerative disease considering feeding tubes or ventilator support
- Anoxic encephalopathy
- Stroke with resultant function decreased by 50 percent, considered life-limiting
- Catastrophic multiple trauma
- Continued use of a ventilator
https://www.vitas.com/
https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care
Late-stage care is also a time for saying goodbye to your loved one, to resolve any differences, forgive any grudges, and to express your love.
https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htm
End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.
https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/
Grief can affect us not only emotionally but also physically, mentally, and even spiritually.
https://www.verywellmind.com/physical-symptoms-of-grief-4065135
Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who have died is common. These visions are considered normal. The dying may turn their focus to “another world” and talk to people or see things that others do not see. This can be unsettling, and loved ones may not know how to respond.
https://kokuamau.org/the-last-stages-of-life/
Many people are afraid of dying. Talking about it, thinking about it, or planning for their own deaths causes them discomfort. This fear may cause them to put off financial planning, preparing a will and testament, or requesting help from a hospice organization.
https://en.wikipedia.org/wiki/Death
Bereavement refers to outward expressions of grief. Mourning and funeral rites are expressions of loss that reflect personal and cultural beliefs about the meaning of death and the afterlife. When asked what type of funeral they would like to have, students responded in a variety of ways; each expressing both their personal beliefs and values and those of their culture.
https://courses.lumenlearning.com/wmopen-lifespandevelopment/chapter/emotions-related-to-death/
Dying can be a positive and rewarding experience; it can be a time of personal freedom and growth. But dying well begins with death acceptance. Furthermore, dying well involves hard work, because dying is more than a physical process.
https://www.meaning.ca/archives/archive/art_death-acceptance_P_Wong.htm
Terminal restlessness is characterized by the sudden appearance of incongruent behaviors rather than the anger, depression, or other emotions commonly experienced during the stages of dying.
https://www.verywellhealth.com/terminal-restlessness-1132271
When an individual is experiencing the symptoms of terminal restlessness, it is important to determine if it is being caused by something that can be treated to alleviate their distress.
https://www.crossroadshospice.com/hospice-palliative-care-blog/2018/january/31/what-is-terminal-restlessness/
Terminal agitation or restlessness can be defined as agitated delirium with cognitive impairment.
https://www.pharmaceutical-journal.com/cpd-and-learning/learning-article/dealing-with-the-dying-patient-treatment-of-terminal-restlessness-and-agitation/11119466.article?firstPass=false
ADVANCE CARE PLANNING IN PRACTICE
☛ Advance care planning can be beneficial.
It has the potential to enable a person to obtain some control over their lives by providing a mechanism for their wishes, values and preferences to be understood and respected by health professionals.
☛ Advance care planning can help reduce uncertainty where health professionals make decisions on behalf of a person who lacks capacity.
It may also help to reduce potential family conflict by prompting early, sensitive discussion between a person and their family members about illness, how best to manage their care, and death and dying.
☛ However, advance care planning is not a panacea.
It carries potential risks and tensions even when it is done well, and these can be exacerbated by an inadequate process.
☛ For instance, advance care planning must find a balance between documenting specific instructions that in unforeseen circumstances may not be what the person would have wanted, as well as non-specific expressions of wishes that must then be interpreted, not by the person, but by their family members and health professionals.
☛ Advance care planning can also be done badly.
It is unclear whether an inadequate advance care planning process is better than no planning process at all, but a good process is clearly a desirable goal. on the impact of advance care planning on patient outcomes will inform this debate.
What palliative care is not
Though the principles of palliative care are applicable in each of the following they are NOT palliative care services
· Care of the Elderly (Geriatrics)
· General practice (Family Medicine)
· Care of the Chronically Ill
· Care of Cancer (Oncology)
· Care of the Incurable
· Pain Relief Service
https://hospicecare.com/what-we-do/publications/getting-started/4-introduction
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
