End of life care: What is it?By :DR ZAINISDA ZAINUDDINAnesthesiologistIsland Hospital
-In medicine, end-of-life care refers tomedical care-not only of patients in the final hours or days of theirlives,-but more broadly, medical care of all thosewith a terminal illness or terminalcondition that has become advanced,progressive & incurable.wikipedia
The case began with a medical tragedythat befell Rasouli, 60, just five monthsafter he and his family immigrated toCanada from Iran in 2010.
The retired engineer underwent surgery atTorontos Sunnybrook Health SciencesCentre in early October of that year toremove a benign brain tumour. In the daysafter the operation, Rasouli developed aninfection in his brain that destroyed tissue inmultiple parts of the organ.
For more than a year afterward, Rasouliwas deemed to be in a persistentvegetative state. Earlier this year, hiscondition was upgraded to minimallyconscious, one of the things giving hisfamily hope that Rasouli will keep gettingbetter.
During her visits, she tries to make himmore aware and asks him to do simpletasks, like giving her the thumbs-up sign.If he is awake and well-rested, she said, heperforms well.
How this case comes to be one consideredby the Supreme Court stems from the factthat Rasoulis brain damage is so profoundthat his body doesnt know it needs tobreathe. For the past two years, he hasbeen on a ventilator, a machine thatbreathes for him. Attempts to wean him offthe ventilator have failed.
Two of his physicians, Dr. BrianCuthbertson and Dr. Gordon Rubenfeld,believe its in Rasoulis best interest to endhis current treatment regime and switch toa program of palliative care.
Some might feel that course of action would,under the law, be defined as activelyhastening a death. But Bernard Dickens,professor emeritus of health law and policyat the University of Toronto, disagrees.
"There is a difference between killing andletting die. This is letting die. Its the naturalconclusion of life," he said. "And in thatsense, there is nothing unnatural or nothingwrong about it. The difficulty is the familymembers — sometimes patients themselves— are sometimes not willing to accept that."
Rasoulis wife, Parichehr Salasel, is hissurrogate decision-maker. A licensedphysician in Iran, she has refused to consentto starting her husband on a palliative caretrack. Salasel told Roumeliotis that thedoctors who say her husband will not getbetter are entitled to their opinion, but shedoes not agree with them and will keepfighting for her husband.
Range of decisions- questions of palliative care,-patients right to self-determination (of treatment, life),-medical experimentation,
-the ethics and efficacy of extraordinaryor hazardous medical interventions,-the ethics and efficacy even ofcontinued routine medical interventions.-the allocation of resources in hospitalsand national medical systems
Hippocrates (460-361B.C.) stated that the role of medicine was “ to do awaywith the suffering of the sick, to lessen the violence of their disease, and to refuse to treat those who are overmastered by their diseases,realising that such cases, medicine is powerless.
Medical futility: No gold standard or formal consenses 3 criteria often used to establish this -terminal -irreversible disease -with imminent death ( within days to week )
Meaningful survival The American Thoracic Society ( ATS ) guidelines defines a life sustaining intervention as futile if reasoning and experience indicate that it would be highly unlikely to result in meaningful survival for the patient.
Meaningful survival Refer to quality and duration of life that would have value to the individual If tx merely preserves permanent unconsciousness ( i.e completely lacking cognitive and sentient capacity ), prolongs dying or cannot end dependence on intensive medical care, the tx is regarded as no value for such a patient
Traditional Goals ofthe Medical Profession: •To cure SOME •To relieve OFTEN •To comfort ALWAYS
The “Culture” of Medicine Focus on “curing” Public expects miracles So does physician: – Death of patient viewed as a personal and / or professional failure by M.D. Perception of public and medical community: – Skills in palliative care are not highly valued
Care Beyond Cure:Palliative Care The treatment of symptoms or suffering caused by an illness without attempting to cure the underlying illness Usually done when curative therapy is not possible
Care Beyond Cure: Palliative Care: focus on comfort. Dimensions: Symptom management (e.g., control-ling pain, nausea, improving breathing) Physical therapy Counseling for person and family Spiritual support
Training Present and Future Doctors inEnd-of-life Care Symptom management Communication re: disease outcomes, establishing goals of care… Legal and ethical issues Cultural awareness Recognizing social and spiritual suffering Hospice care – referring and working with the team
How can we make things better?Understand that Palliative treatment that allows a dignified and gentle death of a terminally ill patient is a medical accomplishment of considerable merit, not a “failure”
Skills Needed for Effective End-of-Life Care… cont’d Working with hospice… The concept of hospice Hospice eligibility The hospice team The last hours of living
Skills Needed for Effective End-of-Life Care… cont’d Ethical and legal issues Advance directives Healthcare agents, surrogates State laws regarding end-of-life care Withholding/withdrawal of treatment Medical futility Physician assisted suicide Recognizing conflict of interest
Skills Needed for Effective End-of-Life Care… cont’d Psychosocial, cultural and spiritual issues… Empathetic approach Principles of grief, mourning and bereavement Recognizing spiritual crises Cross-cultural awareness
Skills Needed for Effective End-of-Life Care… cont’d Effective communication techniques… Breaking bad news Setting treatment goals Discussing DNR orders Recommending hospice care Conducting a family conference Personal awareness and self-care
Skills Needed for Effective End-of-Life Care… cont’d Prognostication skills When is it time to change focus from disease targeted treatments to comfort focused treatments?
Foregoing life support therapy ( FLST )-processes according to which medical interventions either witheld or withdrawn from patients with the expectation that they will die as a result
Do not resusitate ( DNR )EuthanasiaAssisted suicide
What the patient needsfrom the physician • LEADERSHIP--someone to guide them through the process • PRESENCE • HONESTY • INFORMATION
The Challenge ofEnd-of-Life PatientCare Conversely, sub optimal delivery of modern techniques of end-of-life care can result in psychological and physical agony for the patient and loved ones, and a sense of failure and frustration on the part of the physician.
Reality: End-of-life care isNot Optimal today • Physician skills are suboptimal in: – Alleviating suffering – End-of-life communication • Public partly to blame
5 bioethical principal AUTONOMY: gives an informed and capable patient the right o refuse futile medical therapyNON MALEFICENCE: not to harm the patientBENEFICIENCE: to promote the good of the patientJUSTICE: to achieve a fair acces to-and allocation of-limited esourcesDISCLOSURE: providing adequate and truthful information forcompetent patients to make medical decisions
JR , age 60, suffered from end-stage chronic obstructive pulmonary disease. Before theprogression of her condition, Ms. JR was known for her charm, elegance, and love ofdancing. She had an adoring family and many friends.Over the past year she was hospitalized frequently for respiratory and other problems.Each time her condition was more complicated and her stay longer. During her finaladmission she experienced respiratory failure and was placed on a ventilator. The nextday she developed renal failure; hemodialysis was begun. Total parenteral nutrition (TPN)had been started on admission because of dysphagia. Several days later she developedsevere generalized edema; her extremities swelled to twice their normal size, with the skinstretched tight and fluid oozing from the pores. Ms. Riordans eyes were swollen shut, herface beyond recognition.When family members were approached about signing a "do not resuscitate" order, theyrefused, although it was clear Ms. JR was dying. They insisted the physician do everythingpossible, saying, "Shes a fighter. She got through the last crisis, and shell do it again!"The physician said he would resuscitate her one more time, despite the protests of twonurses who felt that would be torturing the patient.That afternoon Ms. JR suffered cardiac arrest, and a full code was called. The physiciancontinued cardiopulmonary resuscitation (CPR) for 45 minutes, until the nurse persuadedhim to stop. Later that day a family member told the physician, "I wish we hadnt askedyou to do that. The way she died was horrible. Ill never forget it."
Michael Thomas, age 79, had been a practicing physician and teacher formore than 40 years. Shortly after his diagnosis of advanced bowel cancer, heinsisted his physician and family promise that no feeding tubes or IVs wouldbe used when he was in the terminal stage. "No heroics!" he insisted. Hiswishes were honored. As his condition declined, palliative care was institutedto keep him comfortable.A few days before his death he surprised his wife by whispering, "If this isdeath, it is peaceful, happy, and painless. Tell them." She asked, "Tell who,the family?" He nodded yes. At the memorial service, his son said that hisfather had remained a teacher even at the end, letting everyone know thatdying can be a peaceful, natural process. The family and friends took greatcomfort from his message.
Two real-life scenarios, two different outcomes. And two families left with very different memories. "How people die remains in the memories of those who live on," said Dame Cicely Saunders, founder of the first hospice at St. Christophers in London.