Marguerite Mueller, MD

Associate Medical Director

Bluegrass Care Navigators

Clinical Assistant Professor

University of Kentucky

COPD

Asthma

Lung Cancer

Pneumonia

ARDS

Influenza

Cystic Fibrosis

Pulmonary Fibrosis

Effects of Chemotherapy

Effects of Sickle Cell Disease

Restrictive Disease due to Skeletal Abnormalities

Restrictive Disease due to Neurological Disease or Injury

Restrictive Disease due to Muscular disease

Is the disease static or progressive?

Is the disease chronic or acute?

What are the patient’s other comorbid conditions?

How compliant has the patient been historically?

Would this patient best be served in the palliative or hospice arena?

Would this patient best be served in an outpatient clinic, acute care hospital, other healthcare facility or at home?

Medical care focused on the relief of symptoms in patients with a life limiting condition

Ideally provides multidisciplinary team support

Team members may include nursing, respiratory therapy, physician, social worker, chaplain depending on the location of services

Usually provided on a consultative basis in acute care

Does not necessarily mean end of life care

End of life care by definition with anticipation of patient demise within 6 months if the disease follows it’s expected trajectory – can be very difficult to predict for pulmonary/respiratory patients, with the greatest accuracy as the patient gets closer to death

Services again multidisciplinary and can be provided at home or in many healthcare facilities

Patient is no longer seeking curative type treatment but instead seeking comfort

Static diseases are few but examples include scarring from a prior injury, stable neurological injury

Most entities are progressive

Or is it both?

COPD

Recurrent Pneumonia

Pulmonary Fibrosis

Cystic Fibrosis

Influenza

Heart disease

Cancer

Diabetes

CVA

Renal Disease

Dementia

Osteoporosis

Spinal Cord Injury

Peripheral Vascular Disease

Drug Addiction

Why is this question important?

What treatments can we realistically offer?

What barriers are preventing patient compliance?

Prognosis

Location

Curative vs. comfort only approach

“End of Life”

“Terminally Ill”

“Actively Dying”

“Terminal Care”

“Transition of Care”

Journal of Pain and Symptom Mgmt 2013 Hui Concepts and Definitions: A Systemic Review

Everyone will die < 10% suddenly

> 90% prolonged illness

Last opportunity for life closure

Little experience with death exaggerated sense of dying process

Time course is unpredictable

Any setting that permits privacy, intimacy

Anticipate need for medications, equipment, supplies

Regularly review the plan of care

Death in Institutions 1949 : 50% of patients

1958 : 61%

1980 : 74%

2001 : 77% 53% in acute care hospitals

24% in nursing homes

(23% home) 1) Teno et al, Brown Site of Death Atlas of the U.S:

www.chcr.brown.edu/dying/usa_statistics.htm and

2) National Mortality Follow-Back Survey

Bronchospasm

Secretions

Dyspnea

Tachypnea

Stridor

Hemoptysis

Cough

70%: Anorexia

61%: Dys81%: Fatigue

pnea

58%: Xerostomia

52%: Cough

49%: Pain

37%: Confusion

35%: Constipation

30%: Nausea

23%: Insomnia

22%: Vomiting

Ng, von Gunten, J P Symptom Management 1998;16:307-316. Fainsinger R, Miller MJ, et.al. J Palliat Med 1991; 7: 5-11.

Treatment influenced by goals of care of patient and family

Treatment influenced at times by prognosis

Decision maker

Chances of recovery

Prognosis

Most troubling symptoms

What setting is the patient in

What type of respiratory support is the patient requiring

How does the patient and or family define comfort

Patient

Guardian

Healthcare Surrogate

Spouse

Majority of Adult children

Parents

Majority of second degree relatives

Patients can have focus on comfort and hospice care but it is a step wise process and each step must be petitioned for independently

Will other underlying conditions lead to the patient’s death making recovery from another process a moot point

Will recovery be too long and laborious for the patient to survive to full recovery or is the patient predisposed to not want to pursue full recovery due to the amount of work involved

It is what the patient says it is

All three are interlinked

Palliative extubation or removal of BiPAP may occur at home or in the hospital or inpatient hospice unit

History and Physical

Examination of the sputum Presence of food particles

Hematemesis

T/E fistula

Purulent sputum Infection

Laboratory and X-ray studies Chest x-ray

CT with contrast

History and Physical

Examination of the sputum Presence of food particles

Hematemesis

T/E fistula

Purulent sputum Infection

Laboratory and X-ray studies Chest x-ray

CT with contrast

Does not equal withdrawal of care.

Does require investment of time, energy and knowledge to perform successfully.

Most recent published article from 2013 in Journal of Palliative Medicine

Limited number of article compared to many other topics

2 new articles in 2015

5 additional articles last year

Two out of 10

Average time to death 8.9 hours

56% dead at 24 hours

25% discharge alive

Awake, decisional patients have the ultimate choice regarding level of life support and focus of care

Those patients who are not decisional may still wish participation in discussions with providers and loved ones if able with healthcare surrogate or healthcare POA ultimately providing decisions

Awake – high risk for distress

Cognitively impaired – able to experience distress

Unconscious – may or may not be able to experience distress

Brain dead – unable to experience distress

Discussion of daily changes

Education regarding medication choices and route of administration

Discussion of information needed from staff to best help patient and family

Utilize all available appropriate staff

Do not forget to include respiratory

Study by Kirchoff and Kowalkowski, AJCC, 2010 – only 29% were confidant in their ability to care for patients during withdrawal

Antibiotics

Lipid lowering agents

Appropriate routes

Alzheimer’s medications

Seizure medications

Nebulizers

Pain

Anxiety

Agitation

Nausea/vomiting

Secretions

● Pathophysiology not well understood as it

may be due to multiple etiologies (lesions,

pleural effusion, bronchospasm, etc.).

● Afferent signals from chemoreceptors and

mechanoreceptors in the airway, lungs, and

chest wall are sent to respiratory center in

the brainstem, which then transmits

information to the cerebral cortex.

● Subjective sensation that includes air

hunger, work/effort, and chest tightness.

● Influenced by physical, psychological,

social, and spiritual factors.

● 21-78% of cancer population, but is just

as prevalent in non-cancer population

(56% in COPD patients, 68% terminal

HIV/AIDS, 61% CHF patients).

● Five etiologic categories

– Cardiac

– Pulmonary

– Neuromuscular

– Psychiatric/Social/Spiritual

– Any combination of the above

Reaction Level Scale – Starmark, et al., 1988 – If able to withdraw to pain or more – likely to experience distress

Respiratory Distress Observational Scale

Utilize BORG scale as outpatient

Heart rate, restlessness, accessory muscle use, paradoxical respirations, grunting at end expiration or guttural sound, nasal flaring, look of fear – all rated on a 0-2 scale.

Distress Intensity cut-point is 3 – thus use of <4 as goal

Campbell et al., Pall Med, 2015

Sum boluses given as pre-medication and to treat distress

Begin infusion rate at 50% of summed boluses

Titrate to RDOS <4

Midazolam

Lorazepam

Phenobarbital

Glycopyrrolate

Hyoscyamine

Scopolamine

Atropine

Cuff leak

Steroids

Cool air

Nebulized racemic epinephrine

Acute infections (PNA, Bronchitis)

Chronic infections (Chronic bronchitis, Bronchiectasis)

Airway disease (COPD, Asthma)

Cardiac (LV failure, pulmonary edema)

Irritant (GERD, Foreign body)

Pleural disease (Pneumothorax, pleural effusion)

Infection- Epiglottitis, diphtheria

Tumor

Aspirated objects Thick sputum

Blood clots

Foreign objects

Crohn’s Disease- rare

Achalasia- Mega esophagus compression of trachea

Myasthenia gravis

Postural manipulation

Heimlich maneuver- for acute onset

Physiotherapy

Bronchoscopy or laryngoscopy

Tracheostomy

Stents

Medications Decadron high dose

Oxygen/Helium 4:1 mixture

Infliximab- for Crohn’s Disease

Cardiac function

Renal function

Hepatic function

Gastric/intestinal function

Protussive Improve cough effectiveness and secretion clearance.

Adequate hydration

Physiotherapy (only in select pts with COPD or bronchiectasis)

Pharyngeal suctioning

Meds

Majority of cases are mild to moderate

<20% are massive (>500cc per day)

Most common causes Infection ~80%

TB

Abscesses

Bronchiectasis

Malignancy ~20%

Anticipation Education of patient, family, and caregivers

Goals of Care

Dark colored towels

Morphine

Anxiolytics

Antitussive treatments Measures to prevent or eliminate cough (used primarily

for dry, non-productive cough. Opioids

Oral local anesthetics

Nebulized anesthetics

Other antitussive agents

Once decision made – prepare family and patient, if appropriate, what to expect

Select a time if at all possible that will allow greatest ease of managing symptoms while in hospital

When do you stop different medications

The art of medicine may supersede the science of medicine when reviewing the different techniques utilized by different providers

What can staff do to ease the process for family?

Diurese

Restrict Fluids

Begin Dexamethasone (4mg IV Q6 Hr) to reduce risk of post-extubation stridor

Consider cuff leak test

FiO2

PEEP

Rate

Length of tubing

Cuff Leak

Now supported by study published 2016 by Campbell, et al., J Pall Med

Much greater measure of respiratory comfort noted with weaning process versus one step

More studies still needed regarding palliative and end of life care in the ICU setting

Each parameter should be adjusted individually

Should be adjusted in 10-20% increments

After patient has had a chance to equilibrate on the new settings then need for medications should be assessed

After determined to have remained comfortable then may adjust settings further. It may be possible to make adjustments every 10 minutes or it may take longer depending on the patient’s individual needs

After final adjustments and patient remains comfortable the patient may be extubated with evaluation for oxygen need based on the RDOS

At times oxygen placed in hospital initially for the benefit of staff and families and may be weaned as well with patient comfort the determiner

Again remember up to 25% of patients palliativelyextubated will leave the hospital alive

Sat <85% and RDOS≥3 – consider low flow oxygen

Sat <85% and RDOS<3 – oxygen not needed

Sat >85% and RDOS≥3 – treat with opiate

As a noninvasive form of respiratory support many of the parameters will require weaning just as with a traditional ventilator

Do not simply remove without appropriate patient assessment

Dignity

Dignity

Dignity