Your terminally ill patient is nearing death. Do you know how to keep her comfortable? Here, you'll learn how to manage common signs and symptoms she's likely to experience.

Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.

In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.

Meet the patient

Margaret Brown, 59, was diagnosed with ovarian cancer 4 years ago. Her treatments have included surgery, several different chemotherapies, and radiation for multiple relapses and chemotherapy-resistant disease. Mrs. Brown now has recurrent, progressive disease with new hepatic metastases and a large posterior pelvic mass. After discussing her prognosis and treatment options with her oncologist, she's decided to accept home hospice care.

Mrs. Brown's adult daughter, Kristin, greets you when you arrive to introduce them to the hospice program. Through your initial assessment, you identify the following signs and symptoms your patient needs help managing.

Pain. Mrs. Brown is in bed, lying still and grimacing. She says she has a lot of pain all over her abdomen and sides. She describes the pain as a deep ache and rates it as an 8 on a scale of 0 (no pain) to 10 (worst pain imaginable).

You need to address her pain before continuing your assessment so that Mrs. Brown can participate fully. Kristin gives her mother a 20-mg dose of immediate-release morphine (MSIR), as prescribed, and massages her back. In about 25 minutes, Mrs. Brown is comfortable enough to sit up and talk. Now she rates her pain as a 1 or 2.

Fatigue. Mrs. Brown says she tires easily and has little energy. Members of her family (Kristin, Kristin's fiancé Brian, and Mrs. Brown's brother and sister-in-law) have begun doing more for her. Mrs. Brown worries that her fatigue will keep her from attending Kristin and Brian's wedding in 3 weeks. She says she lies awake at night thinking and worrying, then naps throughout the day. Sometimes during the day she has trouble concentrating on her crossword puzzles.

Ascites. Mrs. Brown says that she's surprised that she's gained weight in the past month because she isn't eating much. She's wearing her bathrobe because her clothes no longer fit over her swollen abdomen.

Gastrointestinal problems. Mrs. Brown says that eating less keeps her from “feeling full and nauseated all the time.” She used to have a bowel movement every other day, but lately she may go 3 or 4 days before she has one, which is painful and fatiguing.

The good news. Mrs. Brown is breathing comfortably, letting her converse without shortness of breath. Her lung sounds and vital signs are normal. She has no allergies. Her only medications are MSIR, 20 mg, every 4 hours as needed; prochlorperazine (Compazine), 10 mg every 6 hours, p.r.n., for nausea; and a multivitamin.

Mrs. Brown tells you that she's Lutheran and attends services on holidays. She's divorced, with a small extended family.

Tackling the problems

Your initial assessment reveals various distressing symptoms that need attention. Let's consider each one.

Pain. Physically and emotionally distressing, pain varies in its origin, location, intensity, quality, pattern, and even in its meaning to patients. Only the person experiencing pain knows what it feels like.

To relieve and prevent pain, do a complete pain assessment now, then reassess her pain at each meeting. Teach her to use a pain-rating scale so you can track her pain and assess the effectiveness of treatment. (See Assessment tips: Defining pain from every angle.)

You identify Mrs. Brown's pain as severe, visceral pain. You talk with her oncologist and get an order for controlled-release morphine (MS Contin), which she'll take every 12 hours. She'll use MSIR for breakthrough pain. Teach her to take medication before the pain becomes intense. Breakthrough pain medication can be used as needed, even every hour if she needs that much to keep her at an acceptable comfort level. If taking it every hour doesn't control her pain, you'll talk with her health care provider about adjusting her dose of long-acting pain medication. You also teach Mrs. Brown and Kristin about adverse reactions to morphine, particularly constipation.

Gastrointestinal problems. Mrs. Brown has been struggling with constipation caused by her tumor, abdominal compression, and opioids. Constipation can contribute to pain, nausea, vomiting, and anorexia. In a terminally ill patient, constipation may also be associated with decreased fluid intake, inactivity, weakness, diet changes, hypercalcemia, hypokalemia, or even lack of privacy. Therapies for preventing it include stimulant and osmotic laxatives, stool softeners, and lubricants or a combination of these.

Mrs. Brown's oncologist prescribes two Senokot-S tablets to be taken at bedtime. This medication is a combination of senna, a stimulant, and docusate, a stool softener. The order allows her to increase or decrease the dosage as needed to ensure a regular bowel movement every 1 or 2 days. Review the medication and dosage with your patient and teach her to follow the drug regimen as prescribed.

Mrs. Brown's nausea and her “full” feeling may have several causes, such as constipation, slow peristalsis, tumor pressure on her stomach, or anxiety and anticipatory nausea. If indicated, metoclopramide (Reglan), 10 mg, taken before meals and at bedtime can accelerate peristalsis; if this isn't effective, she can increase the dose to 20 mg. She can continue to take Compazine, p.r.n., to control nausea and vomiting. When given as a rectal suppository, it may be easier for her to tolerate.

As the patient's symptoms progress, she may not be able to swallow medication. ABHR gel, a compound of lorazepam (Ativan), diphenhydramine (Benadryl), haloperidol (Haldol), and metoclopramide (Reglan), has proven very effective for reducing symptoms of nausea, vomiting, and anxiety at the end of life. Tell the caregiver to wear gloves when applying ABHR gel to the patient's inner wrist every 4 to 6 hours as needed.

Fatigue. Mrs. Brown wants to attend Kristin's wedding in 3 weeks. To help her reach this goal, you'll assess the reasons for her fatigue and help her mitigate it.

Described as overwhelming and sustained exhaustion and decreased capacity for physical and mental work, fatigue can result from pathophysiologic factors such as pain, organ dysfunction, and competition between the body and the tumor for nutrients. Possible treatment-related causes include anemia and appetite loss related to nausea or vomiting. Environmental stressors, such as a room that's too noisy, light, cold, or hot, may keep her awake at night. Emotional or psychosocial stressors include depression, poor sleep, anxiety, and fear.

If fatigue stems from poor sleep at night, a benzodiazepine such as temazepam (Restoril) may be the answer. Zolpidem (Ambien) and zaleplon (Sonata) are other short-acting sleep agents to consider.

To determine the most effective way to relieve Mrs. Brown's fatigue, consult with members of the interdisciplinary team to root out the cause and tailor treatment accordingly. If she has signs of depression, she should be evaluated. (See Is your patient depressed?)

Confronting anxiety

The hospice social worker, Suzanne Ramone, visits with Mrs. Brown and Kristin and conducts a psychosocial assessment. Ms. Ramone helps Mrs. Brown review memorable times in her life—the highs and lows that make up a life well lived.

Encouraged to talk about her perception of what's happening in her life, Mrs. Brown verbalizes some fears and concerns that are keeping her awake at night. She talks about her funeral and asks what her last days might be like. She agrees to meet regularly with Ms. Ramone to address her anxiety and invites Kristin to participate. The hospice chaplain is available to provide spiritual support; Mrs. Brown says she'll let him know if they'd like a home visit. Ms. Ramone also offers to connect Mrs. Brown with her faith community.

After the interdisciplinary team meets, the oncologist reviews Mrs. Brown's current medicines and orders dexamethasone (Decadron), 4 mg at 9 a.m. and 3 p.m. Dexamethasone, a corticosteroid, may help ease pain by reducing inflammation and edema around her tumor. In addition, it can reduce nausea and vomiting and increase appetite. She continues to take Compazine as needed.

You instruct Mrs. Brown to take Decadron no later than 3 p.m. because its stimulating effect may keep her awake at night. You'll continue to assess her pain.

Dealing with new symptoms

When you visit again, Mrs. Brown reports some new concerns. She says that although she's taking MS Contin every 12 hours, she wakes up each morning with pain and has been relying on MSIR for breakthrough pain. She rates her pain at 4. After you consult with her oncologist, he increases her MS Contin dose. She'll continue to take MSIR as needed to manage any breakthrough pain. Teach Mrs. Brown to keep a record of breakthrough doses she uses. Knowing how much breakthrough pain medication she's using will help the interdisciplinary team assess her response to treatment and titrate drug dosages.

Mrs. Brown reports that she has a bowel movement only once every 3 days. You direct her to increase the number of Senokot-S tablets she's taking (up to three tablets three times a day, possibly more) and to use a bisacodyl suppository (Dulcolax), available over the counter, when needed.

Mrs. Brown has gotten some relief from nausea and can now eat a few small meals each day. But Kristin is concerned about how large her mother's abdomen is. Mrs. Brown tells you that she has more abdominal discomfort, making it hard for her to “get a good breath.” She can't zip up her bathrobe because of her increased abdominal girth. On physical assessment, you note that Mrs. Brown has +2 pedal edema.

To relieve her increasing ascites and lower extremity edema, her oncologist orders two diuretics, spironolactone (Aldactone) and furosemide (Lasix), for her to take daily.

Mrs. Brown's ascites is putting more pressure on her diaphragm, restricting pulmonary excursion and causing dyspnea. The oncologist orders home administration of oxygen at 2 to 3 liters/minute via nasal cannula as needed for comfort.

Opioids are the best medication for dyspnea in advanced cancer, so you teach Mrs. Brown to use MSIR when she feels breathless.³ You also tell her that feeling cool air on her face may give her a sense of more air being available, reducing her perception of breathlessness. Hearing this, Kristin turns the ceiling fan on low in her mother's bedroom—and Mrs. Brown agrees that this helps. A small bedside fan can have the same soothing effect.

You suggest to Kristin that when her mother's feeling especially dyspneic, she can help by sitting with her mother, breathing slowly and calmly with her to help her relax. You demonstrate breathing in through your nose and out through your mouth. A dose of Ativan can also help relieve the anxiety of breathlessness.

Making some plans

Despite the changes in her treatment plan, Mrs. Brown continues to feel fatigued and agrees to accept a nursing assistant's help with personal care. As Kristin's wedding nears, Mrs. Brown worries that she may ruin the day for her daughter if she can't attend the wedding or if she's too tired to enjoy it.

The hospice social worker visits again to address these concerns. After talking with Mrs. Brown and Kristin, she arranges for a hospice volunteer to be ready to spend the afternoon with Mrs. Brown if she's too weak to attend the wedding. Kristin arranges to have the ceremony videotaped so that she and her mother can watch the ceremony together later. These contingency plans help Mrs. Brown feel less anxious.

When you visit 3 days later, Mrs. Brown reports she's using four doses of breakthrough MSIR every day. (More than four would indicate a pain crisis.) You inform her oncologist, who increases the long-acting morphine dose as well as the breakthrough MSIR dose. As her opioid dose increases, you and the caregiver assess her bowel function daily. If she needs more than 10 Senokot-S tablets a day but can't tolerate them, she can take 15 to 30 mL of lactulose, a very effective liquid, once or twice daily. She'll continue to use a Dulcolax suppository as needed.

Dealing with ascites

As pressure on Mrs. Brown's diaphragm increases from ascites, so does her dyspnea. After an interdisciplinary team meeting, the oncologist suggests that Mrs. Brown go to the hospital's short-procedure unit for therapeutic paracentesis to drain the ascites.

You explain to Mrs. Brown that by draining excess fluid, paracentesis should make her more comfortable, but it won't fix the cause of the ascites, which will most likely return. Mrs. Brown discusses the risks and benefits of the procedure with her oncologist and decides to go ahead with it.

Mrs. Brown undergoes an uneventful paracentesis the next morning. She stays at the unit for a few hours afterward and is home by late afternoon. After the procedure, Mrs. Brown says she's feeling better than she has in days because her breathing has improved.

Five days later, with family at her side, Mrs. Brown attends her daughter's wedding. Both she and Kristin are grateful to be together on that day.

The next week, Mrs. Brown spends more time in bed and sleeps more during the day. When awake, she's quiet but oriented and able to communicate her wishes.

Having little appetite, she's consuming mostly liquids and glad that her family isn't trying to force her to eat solid food. Her ascites and dyspnea are returning. She's experiencing some nausea, and she vomited some undigested food twice yesterday. She reports colicky abdominal pain that comes and goes. Assessing her, you find hyperactive bowel sounds and no signs of fecal impaction. Based on your assessment, the physician determines that she may have a bowel obstruction. (See Dealing with a bowel obstruction.)

Surgery isn't an option for Mrs. Brown, who's in the final weeks of life and doesn't want to spend another day in the hospital. The interdisciplinary team focuses on treating the symptoms of her obstruction (pain, nausea, and vomiting) and keeping her comfortable, rather than relieving the obstruction.

The oncologist discontinues Mrs. Brown's laxative medications, to lessen the pressure of peristalsis against her obstruction. A patient who's taking Reglan should discontinue it because it can cause peristalsis, abdominal cramping, and pain. Tell Mrs. Brown to sip liquids or suck on ice chips rather than drinking large amounts of liquids. If her vomiting becomes intractable, she should take nothing by mouth. Teach Kristin how to provide her mother's mouth care.

To control pain and decrease the patient's pill burden, the physician replaces the long-acting oral morphine with a fentanyl patch (Duragesic). Teach Kristin to change her mother's patch every 72 hours as directed.

To control breakthrough pain and dyspnea, the physician orders liquid morphine (Roxanol), to be given sublingually as needed, in place of MSIR. You make sure that Mrs. Brown and Kristin know that “as needed” means as often as neededto get relief, even if that's every 30 minutes. You'll make sure that morphine suppositories are available in the home for breakthrough pain if Mrs. Brown can't tolerate liquid morphine.

The physician also changes the route for several other drugs: Instead of the oral forms, she'll receive dexamethasone as a topical gel.

The next day, Mrs. Brown's vomiting worsens. She vomits immediately each time she tries to take anything by mouth and rates her abdominal pain as a 6 on the pain-rating scale. As ordered, you apply a scopolamine transdermal patch (Transderm-Sc[Latin capital letter Q with macron above]p) behind one of her ears to relieve spasmlike pain and reduce nausea and vomiting.

The physician's orders allow up to three Transderm-Sc[Latin capital letter Q with macron above]p patches, to be changed every 72 hours. The physician prescribes a compounded suppository of ABH (Ativan, Benadryl, Haldol) every 4 to 6 hours to relieve anxiety, nausea, and vomiting. This compound is also available as a gel. He also orders hyoscyamine (Levsin) in case it's needed to manage secretions.

You and the hospice social worker visit with Mrs. Brown and Kristin to talk about the changes in Mrs. Brown's condition. She's now bedridden, not eating or drinking, and sleeping about 20 hours per day. She recognizes her daughter but isn't able to have a full conversation. Kristin says, “I think it'll be soon now.” She and her mother say “I love you” to each other, and Kristin tells her mother that she'll be okay.

Lessening secretions

You're the on-call nurse 2 nights later when Kristin calls to report that her mother is “gurgling.” Mrs. Brown is completely unresponsive now. Kristin has tried turning her mother onto her side so that the mucus could drain, but the gurgling has continued. Kristin is afraid that her mother will suffocate or choke.

This “wet breathing,” once called a death rattle, is common in the final hours or days of life. As Mrs. Brown becomes less responsive, she loses the ability to swallow and clear secretions from her throat and bronchi. As air moves over these secretions, it makes a gurgling sound. The patient may be unaware of this sound, but it can be extremely distressing to caregivers.

If a patient can cough and raise respiratory secretions, you can encourage her to do so, but she may be unresponsive or too weak. Should you suction the secretions? That's generally not recommended for a terminally ill patient because respiratory secretions tend to be low in the throat and placing a suction catheter deep into the trachea causes discomfort. Anticholinergics such as atropine, scopolamine, and hyoscyamine are effective in diminishing secretions and relieving wet breathing. Educate the family about what to expect and what they can do.

Mrs. Brown already has one scopolamine patch applied behind her ear to relieve spasms in her colon and decrease secretions. You advise Kristin to apply a second scopolamine patch behind her mother's other ear, to help decrease the secretions, and to change the patches every 72 hours.

Because it'll take 4 hours for the additional patch to start working, you tell Kristin to give her mother one hyoscyamine tablet sublingually. It takes effect in 30 minutes and remains effective for about 4 hours. At that point, the scopolamine patch will have begun working and the wet breathing should lessen. Scopolamine dries mucous membranes, so remind Kristin to moisten Mrs. Brown's mouth frequently with moist swabs, a wet washcloth, or lip balm.

You prepare Kristin for her mother's final hours by describing the signs and symptoms of approaching death: breathing that's “wet,” slow and shallow, or loud; urinary changes such as incontinence or minimal urinary output; sometimes increased pain, moaning, restlessness, or agitation that may change to peaceful calm as death becomes imminent; cool extremities that may or may not be mottled; sweating; and apnea.

You phone Kristin 1 hour later to get an update and offer your support. Mrs. Brown is unresponsive, but she seems calm and peaceful. Kristin and Brian are with her when Mrs. Brown dies early the next morning.

Constant adjustments

This case study demonstrates how dynamic end-of-life care can be. To manage symptoms effectively, continually reassess your patient's condition and adjust the care plan accordingly. Through collaboration with the patient, significant others, and interdisciplinary team members, you can meet your common goal of keeping the patient comfortable at the end of life.

Assessment tips: Defining pain from every angle

When you assess your patient's pain, ask questions like these to get a full picture of her pain experience.

* Can you point to the pain or is it everywhere?

* Does it travel? If so, where?

* How do you rate your pain on a scale of 0 (no pain) to 10 (worst pain ever)?

* How would you describe your pain (dull, aching, lancing, burning, sharp, itching, throbbing, squeezing, or tingling)?

* Is pain always present or does it come and go?

* Does it come on quickly or build slowly?

* What relieves your pain? What aggravates it?

* What adverse reactions have you had?

* What treatments, including medications and complementary therapies, have you tried so far? How did each one work?

* What do you think is the reason for the pain?

* How is this pain affecting your life, your emotions, and your relationships?

If a depressed mood is interfering with your patient's quality of life or keeping her from addressing her end-of-life tasks, she should be evaluated for depression. If she chooses to treat it, her practitioner may prescribe an antidepressant, often a selective serotonin reuptake inhibitor (SSRI) such as paroxetine (Paxil) or sertraline (Zoloft). But an SSRI may not be the best choice for someone at the end of life, because it may take 4 to 6 weeks to work. For a patient with no time to spare, methylphenidate (Ritalin), a psychostimulant, may be a good alternative. Effective and well tolerated, this drug may bring about an improvement in as little as a day or two.

Dealing with a bowel obstruction

Besides fecal impaction, possible causes of bowel obstruction in a patient with advanced cancer include tumor mass; treatment consequences, such as adhesions from radiation therapy; or medication. Complete or partial obstructions can be anywhere in the intestine.

Surgery may be appropriate if the patient can tolerate an invasive procedure, if her life expectancy is months (not days), and, most important, if she wants aggressive intervention. Sometimes nasogastric suction is used instead of surgery, but it can be uncomfortable and make breathing and talking more difficult.

REFERENCES

Economou D. Bowel management: Constipation, diarrhea, obstruction and ascites. In B Ferrell, N Coyle (eds), Textbook of Palliative Nursing, 2nd edition. New York, N.Y., Oxford University Press, 2005.

Johnson DC, et al. Pain and symptom management. Current use of guidelines, protocols, and care pathways for symptom management in hospice. American Journal of Hospiceand Palliative Care. 21(1):51-57, January-February 2004.

Web sites last accessed on October 3, 2006.