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124
T. N. Goring and I. L. Nelson
• Patient, family, or physician uncertainty re: prognosis or
goals of care.
• Patient or family requests for futile care.
• DNR order conflicts.
• Use of artificial nutrition in seriously ill patients.
• Limited social support and a serious illness (e.g., homeless,
chronic mental illness).
• Patient or family psychological or spiritual distress.
Starting theConversation/Important Documents
Patients with whom you want to discuss advanced care plan­ning need to want to discuss it too—the first step in starting the conversation is to assess your patient’s willingness to have it. Visits arranged for the purpose of advanced care planning are covered by Medicare. Your goal in these conversations is to guide your patient in deciding what their goals of care are. For example, do they want to avoid going to the hospital, even if this means forgoing aggressive treatment that might be life prolonging? How much discomfort are they willing to tolerate? How involved do they want their families to be? Are there things they want to accomplish or events (gradua­tions, weddings) they want to attend before they die? If they are from another country, do they want to spend the last part of their life there?
Each conversation will be different because, at heart, you are asking about your patient’s most deeply held beliefs about the meaning of life and death, their role in their com­munity, and the role of spirituality in their lives. When your patient is from another country, cultural differences will exist—talk of death, for example, may be unacceptable; when they are African American, they may have a lack of trust in the medical system that will influence their decisions about code status [5]. Cultural competency, the umbrella term for
Chapter 5. Care at the End of Life: Palliative…
125
these different ways of looking at care, is a huge subject and well beyond the scope of this chapter. However, if you try to understand your patient’s perspective on their illness, and explore what is important to them now and what their hopes are for the future, you can work together to formulate goals of care.
Here are some initial considerations:
• Avoid medical terminology.
• Listen more than talk. Allow periods of silence.
• Respond to cues.
• Understand that patients almost always know how sick
they are and that talking about it may be a relief.
• Make medical recommendations—remember, it’s the fam-
ily/patient’s job to define their goals and your job to
describe how their goals can be achieved.
• Make sure your patient knows that you will continue to
care for them, no matter their decisions.
A useful structure for these conversations is the SPIKES protocol, which was developed by oncologist Robert Buckman in the late 1990s [6]. While its original intent was to help oncologists deliver bad news to their patients, it is equally applicable to conversations introducing palliative or hospice care. SPIKES is an acronym:
S for setting: It should be quiet, calm, and comfortable. Important family members, friends, and possibly clergy should be invited.
P for perception: What does your patient think about their health?
I for invitation: Ask your patient how much they want to know about their disease and its probable course.
K for knowledge: Give you patient warning that you are going to bring up some tough issues.
E for empathy: Respond to your patient’s reaction.
S for strategy: End every conversation with a plan for the
future, even if it’s a plan for another conversation.
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T. N. Goring and I. L. Nelson
There are a number of legal and medical documents used in advanced care planning. The two most important are as follows:
• Health care proxy (HCP)—a form signed by the patient
that names an alternate decision-maker if they are ren-
dered incapable.
• MOLST (Medical Orders for Life-Sustaining Treatment)
Form—a more specific set of medical orders, signed by a
physician, detailing code status and level of medical
interventions.
Both of these documents can help your patient to think more specifically about their goals. For example, the MOLST form addresses artificially administered nutrition, use of anti­biotics, and future hospitalizations. And assigning an HCP will lead your patient to discuss what kind of care they want in the future with their HCP.
It’s important not to focus too much on DNR/DNI (do not resuscitate/do not intubate) orders. Some patients might have firm opinions from the outset; some may not. DNR and DNI are a small part of advanced care planning.
Patients should keep copies of both these documents with them, especially when transitioning between different sites of care.
Management ofCommon Symptoms inPalliative Care
Almost all symptoms can be controlled in any setting with medications, with or without minimally invasive options. You will be using medications you are familiar with, but some­times in different ways and at different doses. While it is important to arrive at a diagnosis, the main thrust of treat­ment is comfort: diagnostic tests should be used judiciously, and medications should be titrated to achieve comfort.
Chapter 5. Care at the End of Life: Palliative…
127
Shortness ofBreath
Determine whether or not the patient requires an inpatient evaluation. Assess resting respiratory rate, pulse oximetry, and auscultate lungs for adventitious sounds. Shortness of breath (SOB) in a patient receiving palliative care should be evaluated as in any patient with SOB.
Once you’ve identified the underlying cause, discuss treat­ment options with your patient or their surrogate. Many epi­sodes of SOB can be relieved with measures such as low-dose opioids, supplemental oxygen, antibiotics, diuretics, steroids, and treatment of anxiety. All these interventions can be administered at home, with hospice support. If more aggres­sive measures are required—i.e., fluid drainage—determine if these are in alignment with your patient’s goals of care.
If intubation is on the table, tell your patient how likely it is that they will be successfully extubated. Assure them that you can keep them comfortable without intubation if that is their choice. Document your conversation and make sure their surrogate is aware.
In the actively dying patient, focus on comfort. Consider a cooling fan for air hunger. Oxygen via nasal cannula is the stan­dard of care, but face masks can also be used. High-flow nasal cannula (HFNC) oxygen often cannot be administered at home, and the patient would have to be admitted to a facility—hospital or inpatient hospice for O2 via this modality—if that is in keep­ing with the patient’s goals. Opiates to treat tachypnea should be given as an infusion or in standing doses; there is no dose ceiling and the goal is to achieve a respiratory rate of 12 or less. Opioids can be delivered orally, sublingually, subcutaneously, transder­mally, intrathecally, or via an intravenous drip (Fig.5.3).
Constipation
Constipation is a very uncomfortable symptom and should be managed aggressively. Opioid use, dehydration from poor
128
T. N. Goring and I. L. Nelson
Assess Respiratory Rate
Check Pulse Ox
Ascultate Lungs
Refer to CXR (if available)
ABG (if appropriate)
Check for potentially
reversoble causes:
Shortness of Breath
Consider O2 via NC
and titrate up to Pulse
Ox of 92%
If pt is actively dying:
Consider positioning,
fan, breathing training
Bronchospasm → Nebs
CHF → consider
BNP/Echo furosemide
Pneumonia → Abx +/-
Steroids
Pleural Effusion →
thoracentesis, PleurX
Anxiety → anxiolytics
Acute or Chronic PE →
LMWH
Lorazepam IV to suppress
respiratory drive
Morphine for air
hunger SL or vis IV drip
Chlorpromazine
PO/SQ or infusion
F . Algorithm for shortness of breath at the end of life
intake, vomiting, and limited mobility are the main factors that place this population at high risk for constipation.
Ask about stool frequency, opioid use, and other medica­tions. On physical exam, assess hydration status, and look for
Chapter 5. Care at the End of Life: Palliative…
signs of obstruction or fecal impaction. Determine if there is an underlying, reversible medical cause that could be treated and if treatment of such a condition is congruent with the palliative goal. Non-pharmacologic lifestyle modifications should be tried before medications—discontinue, substitute, or adjust doses of constipating medications; increase fluid intake; increase fiber intake; and encourage mobility anorec­tal testing, colonic transit testing, defecography, and surgery which are invasive and unlikely to be beneficial in the pallia­tive care population. Biofeedback or pelvic floor training should be considered.
Treatment includes stool softeners, laxatives (bulk, osmotic, stimulant), rectal suppositories, and enemas in escalating doses and combinations. There are currently no evidence­based guidelines on the order in which to give laxatives, but the American Gastroenterological Association provides guidelines for initial management of constipation [7]. Know the difference between stimulant (bisacodyl, senna) and osmotic (polyethylene glycol, lactulose, sorbitol, milk of mag­nesia, magnesium citrate) laxatives as well as the form and volume in which they are provided (pills vs. liquid). Some patients may have difficulty swallowing pills or be intolerant to sweet or large volume of liquids. Stimulant laxatives may cause excessive cramping. Prescribe the form most comfort­able for the patient at the lowest dose to encourage a bowel movement (Fig.5.4).
129
Nausea/Vomiting
Nausea is an uncomfortable feeling which often precedes vomiting. Both are protective mechanisms by which the body expels toxins, unsavory food, etc., but they can also be trig­gered by emotional causes and medications. The symptoms can originate in the CNS or the GI tract, and several mecha­nisms are usually involved. In the palliative care population, nausea and vomiting are most frequently caused by chemotherapy, opioid use (where symptoms usually resolve over time), obstruction/constipation, increased intracranial
130
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T. N. Goring and I. L. Nelson
History and Physical
Perform Abdominal Exam
Abdominal Distention Consider
Upright KUB xray to r/o
obstruction/perforation
Consider Rectal Exam r/o impaction
Constipation
Discontinue non-essential
constipating meds
Step 1Step
Increase Dietary Fiber Bulk-Forming Laxative
(Psyllium)
Stool Softeners (Docusate)
Gentle Laxative (MOM)
Laxative + Suppository/Enema
Polyethylene Glycol/Senna
+/- Promotility Agents
tep 3
Lactulose/Mag Citrate/
Polyethylene glycol
Chronic Opiate Use
Methylnaltrexone (SQ) if no
bowel obstruction
F . Management of constipation in palliative care
pressure caused by CNS lesions, metabolic disturbances (renal failure, hypercalcemia), and/or anxiety.
Determining the underlying etiology of the nausea/vomiting will help you choose the appropriate medication/intervention that will help. Commonly used treatments in palliative care are as follows:
• For drug effect: haloperidol, ondansetron (esp chemo
related)
• For increased intracranial pressure: dexamethasone
• In ESRD: haloperidol, dose reduced
• For anticipatory nausea: benzodiazepines
• For ileus, gastroparesis: metoclopramide
• For obstruction: octreotide, dexamethasone
• No obvious cause: metoclopramide, dexamethasone
A multimodal approach is usually indicated. Choose agents with different mechanisms of action at the lowest effective dose (Fig.5.5).
Chapter 5. Care at the End of Life: Palliative…
131
causes
Asses for reversible
Nausea/Vomitting
Determine etiology
Avoid polypharmacy
receptors
and target specific
(CTZ)
Opioids/Anesthetics/Chemo
Chemoreceptor Trigger Zone
GI Dysmotility/
Partial Obstruction
candidate)
obstruction
(not a surgical
Other
(3rd line)
receptors
Solitary tract
nucleus/medulla
Receptor
(2nd line)
Dopamine
(1st line)
Receptor
Serotonin
Receptor
(2nd line)
Serotonin
(1st line)
Receptor
Dopamine
Add Octreotide
SQ + Decadron
tube
Nasogastric
Lorazepam
Dexamethasone
Droperidol
Chlorpromazine
Ondansetron
Ondansetron
Droperidol
Chlorpromazine
gastrostomy
If fails, venting
Dronabinol
Promethazine
Metoclopramide
Prochlorperazine
Granisetron
Palonosetron
Granisetron
Palonosetron
Promethazine
Metoclopramide
Prochlorperazine
Vestibular/CNS Mechanical
Vertigo
Motion sickness/
Receptor
Acetylcholine
Receptor
Histamine
Scopolamine
Meclizine
Dimenhydrinate
Diphenhydramine
F . Assessment and management of nausea and vomiting in palliative care (Modified from Flake, Z.Am Fam
Physician. 2004 Mar 1;69(5):1169–1174)
132
T. N. Goring and I. L. Nelson
Pain
One of the first rules of palliative care developed by Dame Cecily Saunders is that continuous pain requires continuous treatment. Most palliative care patients have continuous pain, and so it is important to develop a treatment regimen that can be delivered around the clock. While opioids are a main­stay, adjuvant medications can provide a synergistic effect that may lessen the dose of opioids required.
Pain is divided into three broad categories. Visceral pain is usually abdominal, poorly localized, and deep and squeezing in nature. Somatic pain is usually incisional or musculoskele­tal, well localized, and sharp in nature. Neuropathic pain results from nerve injury caused by chemotherapy, tumor compression, or radiation therapy and is burning or stinging in nature. These categories are important because they will determine which medications will be of most benefit. However, in practice, most pain is mixed in origin.
Adjuvant medications include acetaminophen and NSAIDS; unless there are contraindications, they should be part of all pain regimens. For visceral pain, anti- inflammatories like dexamethasone or prednisone are very effective. Somatic pain responds well to NSAIDS. Neuropathic pain responds best to tricyclic antidepressants and SNRIs and anti-epileptic drugs such as gabapentin and topiramate.
When beginning treatment with opioids, start low and go slow. Use oral formulations. Start with as needed (PRN) dosing of short-acting forms, and, when an effective dose has been established, change to long-acting formulations. Always con­tinue PRN dosing of short-acting medications to treat break­through pain. And, always give medications for constipation—this is a side effect of all opioids and requires a stimulant. When dosing, remember that there is no ceiling dose for opioids— medications should be titrated until relief is achieved.
Anesthesia-based interventions (nerve blocks, intrathecal pumps, spinal stimulators) may be useful in certain regional pain syndromes. These interventions may be appropriate for patients with intractable side effects secondary to opioid use and/or patients on excessive doses of opioids by allowing the
Chapter 5. Care at the End of Life: Palliative…
133
patient to reduce or eliminate opioid use. Radiation therapy is also a useful pain treatment modality, especially in cases of cancer-related bone pain.
The World Health Organization (WHO) has developed a three-step ladder for cancer pain relief [8]; an algorithmic version is presented in Fig.5.6.
Pain
Assess character, quality
duration, source,
location of pain
Nociceptive Neuropathic
Inflammatory
Mixed category
Mild
Non-opioids
+/- adjuvant
Acetaminophen
NSAIDS
Adjuvants - (TCA,
Anxiolytics)
Non-medication pain relievers
Topical agents
Massage
Physical Therapy
Acupuncture
Document allergies
Moderate Severe
Weak Opioid
+/- adjuvant
Codeine
Oxycodone
Hydrocodone (low dose)
Morphine (low dose)
Anesthesia-based Interventions
for ongoing pain or intolerable
side effects
Nerve blocks
Intrathecal Pain Pump
Nerve stimulator
Radiation for bone pain
Strong Opioid
+/- adjuvant
Morphine
Hydromorpone
Fentanyl
Oxymorphone
Methadone
F . Management of pain in palliative care (Modified from WHO Stepladder)