END OF LIFE ISSUES 41 st Semi-Annual Family Practice Review Course Lewis Katz School of Medicine at Temple University Stanley J. Savinese DO FAAHPM HMDC Medical Director VNA Hospice of Philadelphia Co-Director Temple University Hospital Palliative Care
Objectives Upon completion of this presentation, participants should be able to: Assist patients and families at end of life in clarifying their wishes Describe what services are available to dying patients and their families Provide basic symptom management to ensure comfort in dying patients
END OF LIFE
FIRST INCLINATION Get in your car and drive away and when you run out of gas get some more and keep going. We are trained to fix things, the coming of death feels like a failure. On second thought EVERYBODY DIES. The end of life is when patients need us most. (For millennia that is all we did!)
DEATH WILL COME (and we can actually help!)
Fun Facts about Death 90% of Americans die after living with one or more life-threatening illnesses Most who die are elderly median age of death >75 years and population is aging Most die in institutions 25% of deaths occur at home More than 70% of Americans would prefer to die at home (Robert Wood Johnson Foundation)
More Fun Facts Family ratings of EOL care have declined over the past 10 years despite national efforts to improve care unless.. When Hospice is involved families rate the EOL care was excellent over twice as many times.
Mortality in the ICU 30-40% of all patients admitted to the ICU will die while in the ICU or before hospital discharge 22% of all deaths in the USA now occur in or after admission to an ICU ICU survivors have a 39.5% 3 year mortality rate ICU survivors who received mechanical ventilation have a 3 year mortality rate of 57.6% 30.1% of ventilated patients died within 6 months after ICU admission Toves, C, Anesthesiology Clin. 30 (2012) 29-35
More Fun Facts 10 20% of trauma patients admitted to the ICU will die from their injuries. The majority of deaths in the ICU are now accompanied by withholding and withdraw of life support technology Demographic changes show an increase in elderly trauma victims. More focus is placed on quality of life and functional outcomes, (not just mortality), as endpoints of trauma care. Mosenthal A., J of Trauma, 2008; 64: 1587-1593
Long Term Care and Death Long Term Acute Care facilities (LTACs) have been increasingly used by hospitals to facilitate recovery from a critical illness. The 1 year survival of Medicare beneficiaries transferred to an LTAC is 52% Strategies are needed to improve communication about prognosis and ensure decision makers do not have unreasonable expectations surrounding long-term acute care Khan J., JAMA 2010;303:2253-9
DEATH WILL COME When it is clear death is approaching, attempt to find out patient s wishes from patient (if possible) or from family. Dying of old age and disease does not have to be a medical emergency. It is important to frame the question properly What would he/she want not What do you want us to do to him/her? Knowing what services are available and remaining involved can be an enormous help
What Services are Available Palliative Care Hospice Care Home Inpatient Residential Respite
Palliative Care is not Hospice Palliative Care? It s not too late for aggressive treatment! Ok, call us when it s too late
Palliative Care Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness whatever the diagnosis.
Palliative Care The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
Palliative Care The Early Years
What we do in Palliative Care Management of pain and other symptoms Discussion of difficult end-of-life issues such as treatment options and advance directives and levels of care. Guidance and support with decision making Counseling and spiritual support for patients and family Educational programs and support for healthcare providers
Who is the Palliative Care Team Palliative Care teams in 2017 vary widely in make up. Some teams are exclusively nurse driven Many smaller teams consist of Nursing and a part time Physician or CRNP Established teams often consist of Nurses, (usually including CRNPs), Physicians, Social Workers and Chaplains, preferably full time. (Basic requirements for Joint Commission Certification). Some teams include Psychologists or Psychiatrists, Pharmacists, Art and Music Therapists and Volunteers
Who is the Palliative Care Team
What is the benefit? Patient s symptom needs are addressed, leading to better quality of life and decreased hospital readmission Goals of Care are explored and defined. Patients often compile an Advance Directive or chose a clear path for their care Patients may elect comfort care and avoid treatments that are more burdensome than beneficial
Resources in Palliative Care GetPalliativeCare.org (Resource for patients and medical professionals interested in learning more about Palliative Care) CAPC.org (Center to Advance Palliative Care: Extensive resources for medical professionals) Aahpm.org (American Academy of Hospice and Palliative Medicine: Extensive, mostly educational resources for medical professionals) Nhpco.org (National Hospice and Palliative Care Organization: Resources for administrators and providers).
Sugar Coatings are not Always Sweet Speaking openly about the reality of impending death can do wonders in terms of avoiding unnecessary liability Setting realistic expectations and allowing open dialogue is key to facilitating informed consent.
OPTIONS Full aggressive care. Cultural, philosophical or personality traits may lead some hopelessly ill people to pursue aggressive care when it is clearly futile. Selectively aggressive care. Often a reasonable compromise. Comfort care. COMFORT CARE IS NOT GIVING UP.
FULL AGGRESSIVE CARE Attempt to discern why this is being requested. Fill in gaps in knowledge about illness, prognosis, options when possible. In rare instances, hopelessly ill patients do improve. Additional consultants, Ethics committee input sometimes helps Transfer service may be an option. (Good luck!)
CROSSROADS
CROSSROADS Often there are natural decision making points in the course of an illness Surgery, chemotherapy, radiation or not Long term life support or not (Trach/peg) Try to avoid emotional input and respect decision while supplying needed info for informed decision
SELECTIVELY AGGRESSIVE CARE May give patient or family needed time to absorb information about prognosis and for additional family to visit. May allow for completion of medical regimen or procedures which could help improve comfort. (Like a radiation treatment) May allow avoidance of particularly burdensome futile interventions (like dialysis?)
COMFORT CARE May allow patient to enjoy remaining life span instead of hanging around hospitals May end burdensome and futile interventions that produce mainly suffering with no hope of meaningful improvement Should always be at least a consideration when terminal illness is present. Never be afraid to ask How do you want to spend your final days?
COMFORT CARE Relief of symptoms is primary goal: pain, dyspnea, anxiety, etc. even if providing adequate treatment may shorten life span Hospice care may be the best option May need to be a process, chronically ill patients and their families may need time to adjust. Who is going to check INR? There may be very complex issues afoot such as.
VENTILATOR REMOVAL
VENTILATOR REMOVAL Some patients are fully dependent and die very quickly, some are with us for hours or days. Help family understand. The ventilator has an off switch. The patient does not. Morphine bolus and drip, Lorazepam and Haloperidol may enhance comfort even if patient appears to be comatose. Have extra Rx ready in case patient becomes uncomfortable. (Try to avoid flailing and gasping).
And before we talk about Hospice Care, now a few words about Symptom Management in END OF LIFE
Symptom Management Pain Dyspnea Delirium Anxiety Nausea/Vomiting Constipation
Pain in End of Life Opiates are the gold standard Concentrates can be very helpful (Morphine 20 mg / ml) Around the clock dosing and breakthrough dosing (usually with a different Rx) is best Don t forget about constipation
Dyspnea in End of Life Morphine Morphine Morphine Morphine Morphine Morphine Portable fan and O2 can help some too
Delirium in End of Life Low dose Haloperidol is a good place to start, also available in concentrate (0.5 mg Q 2 hours prn) Scheduled doses can be very helpful (0.5 mg Q 12 hours) Benzodiazepines can often worsen Delirium!
Anxiety in End of Life Lorazepam is the gold standard (also available in concentrate) 0.5-1 mg Q 4 hours prn can make a huge difference Benzodiazepine Rx may also help myoclonus and be effective for control of seizures
Nausea/Vomiting in End of Life Our old friend Haloperidol can often be the best bet (0.5-1mg Q 4hours) Lorazepam can be helpful in the setting of QTc prolongation Ondansetron not often too helpful in this setting
Constipation in End of Life 2 Sennoside tablets twice a day is a good place to start Bisacodyl suppositories for rescue when beyond 48 hours Lactulose may help in several ways?methylnaltrexone???
How is Palliative Care different from Hospice HOSPICE Prognosis of 6 months or less Terminal diagnosis Total focus on comfort care Home, Nursing Home, Inpatient Unit, or Residential Hospice Setting Separate Medicare Benefit
How is Palliative Care different from Hospice PALLIATIVE CARE Appropriate earlier in the course of illness Not always imminently terminal Comfort focus may be combined with curative therapies Usually in Hospital (or possibly Home Care) Part of treatment plan, usually Consult Service, traditional billing
HOSPICE CARE HOME : Patient has an expected life span of at least days or weeks and has home support. Home hospice care can be delivered in a nursing home. INPATIENT : When aggressive symptom management is needed, hospice care can be delivered in an Inpatient Hospice (or possibly in a hospital) for a week or so.
HOSPICE CARE Delivered by care givers (usually nurses) who are readily available for advice and management and can anticipate needs for comfort treatments Support for the family that is otherwise not available in a very emotionally charged situation. Bereavement services up to one year after patient is deceased can be a great comfort when questions come up Did we do the right thing, did we jump the gun?
HOSPICE CARE Few families understand that most of the care for the terminally ill patient is given by the family. It is important to make sure they understand what they are getting into. It is rare for everyone to agree that hospice care is the best course. Reframing the question to include the patient s wishes can often help
PATIENT S CHOICE It is up to the patient and their family how they wish to spend their final time It is up to us to provide clear, timely and compassionate information to allow them to make an informed choice. Try to avoid undue influence on the choice that is made. A few kind words and a few simple medicines can make an impossible situation tolerable
Questions