Lecture 1 - Basics

life expectance has changed (people get older, mostly die bc of diseases exp. Cancer…)

-          80% of people over 65 have a chronic disease

-          86% of all deaths are due to chronic disease

• young women suffered from caridac arrest

• - the cerebral cortex was irreversinly damaged, the brain stemremained functional

• - she was persistent vegetative state

• - alternating between sleep, wakefulness, patient reacting to light, not recognizing anything,unable to communicate

• unresponsible to stimuli

foundes by marie svatosova

• first one in CR = Cerveny Kostelec

Palliative care is an approach that seeks to improve the quality of life of patients and their families who are struggling with problems related to a life-threatening illness

• PC concerns the QoL of patient with life-threatening illness, but ALSO focuses on the family

• multidisciplinary approach

• identifying and addressing: pain, but also psychoscoail, spiritual problems

• can be done together with curative treatment

• integration of psychological and spiritual aspects of care

  
  

Assessing problems

Identifying wants and needs —> very individual, talk to loved ones

Psychological support

PC starts before hospice care

Respect for patient autonomy —>what do you need/ what is the most important for you? à often “Leave hospital” “come home”, but not that easy: they need medical support/people who watch out for them there

Support for family members (even after the death of their loved one during the grieving process) —> PP doesn’t end after death of patient: one work with families after death about the struggles related to death of the lost one —> One of the most important help for families: just know that someone is there for them, who they don’t bother with their problems/concerns

• pain relief

• seeing death as a natural part of life

• enabling the pateint to live the end of life actively

• helping the family to care for the patient AND to grief

• using the team to meet the nedds of the patient and family

• hastening death

• efforts to postpone death

• NOT EUTHANASIA!!!

a health care worker intentionally uses medications to terminate a patient's life to end their pain and suffering. à more active part

physician gives patient a prescription medication to die. Patient had to take it themselves, physician is “passive”, just has the role of a supervisor

-          high dosed opioids are used for the patient in really bad pain /already almost dying à he/she could “sleep until the end” without pain à goal: achieve a level of sedation to control the symptoms of the patient.

-          Parents often scared about talking about death with their children à often taboo topic

-          Who decides what makes a life “worthy”? à quality of life?

-          Ethical dilemma: right to die vs. right to be alive

-          Decision also for physicans very difficult: as soon as they give support to breathe they cant just stop It again à then it would be killing

including: Physician, Nurse, Social worker, Psychologist, Chaplain

—> no hierarchy, working together and learning from one another

-          Inpatient hospice: 1 patient, 1 room—> open all day and night for people to visit, possibility to sleep over, order food…

-          Community care: care staff comes home to patients —>but there always have to be someone who takes care of patient (first caregiver)

-          Hospital: not common to have a palliative sector here (only in 3 hospitals in CR) —> palliative team/consultation team: physicans tell them as soon as patient is in a really bad condition

Elderly/nursing home: many old people who live in facilities together

-  NOT postponing death ( no reanimation if person with life threatening disease )

-  Try to arrange the situation the best for the patient —>Patients often don’t want to be a burden for their families/friends à dignity? Don’t want beloved ones to do hygienical stuff

-   Inform the patient even though info is bad

àphysicians often afraid of telling bad news (destroy relationship, frustration/motivation) —> but honesty is what most patients really want

• Semistructured interviews (n=19) ⇒ Face-to-face administered questionnaire

• 40 items ranked on 5 point Likert scale (1=strongly disagree – 5=strongly agree)

• demography factors - 2017 in Prague, three hospitals

• patients, n = 170 & physicans n = 113, relatives n = 107 —> all of them should rate how imprtant different factors are for the patient

• 
  

• being independent in care about myself

• not having pain

-          Having opportunity to contact a chaplain

-          Be free of pain

—> compared to relatives/physicans

-          Have enough energy, not be tired

-          Get information, even if they are bad

è Lost of dignity, pain, to be apart from loved ones

• early palliative care for patients with lung cancer

People who got PP:

—> Better QOL

—> Decreased depressive symptoms

—> Less aggressive and less expensive treatment at the end of life

—> Longer living time

• bereaved relatives with PC

• —> less intensive grief ( measured 7 months after the death)

Benefits of palliative care for patients

• Better quality of life

• Better symptom control

• Advance care planning

• Patient and caregiver satisfaction with care

• Lower health care utilization

• Effect on survival was not confirmed

•  60 % die at hospital, 10%, aftercare clinic, 11% nursing homes, 12% die at home

•  78 % people want to die  at home, 7% do not want do die at home

è People most often think of dying well or with dignity as dying in their sleep (26%), painlessly (26%), with family (21%), and preferably quickly (14%).

• 70% have thought about how they would like to spend their last days, 36% have talked about it (most often with family members)

• 30% never - ironically more people over 60

-           This is a legal document

-          Serves for times when a person is no longer able to communicate

-           It is necessary to have enough time to write it - consultation with a doctor

-          It is necessary to appoint a guardian

-          It must be certified and contain written instructions from a medical practitioner

-          It must specifically describe what interventions the patient does not want (e.g. PEG probe)

-           Share with carers (so they know)

-          Also “little” rules (e.g. I don’t want to get antibiotics anymore)

-          If youre under any circumstances are treated in another hospital than in the one you made the deal, it isn’t worthy. So communicate/take it with you

-          PEG: kind of intervention —> for patient who are not able to eat /absorb drinks/food —> surgery for artificial nutrients (for older people can it be dangerous —> infection etc), in patients with dementia etc it can be helpful (often an issue which is discussed)