Hospice Patients Alliance: Consumer Advocacy


Patients with terminal illnesses may experience respiratory distress, difficulty breathing comfortably. Shortness of breath may be mild or extreme. Persons who have diseases affecting the lungs or heart disease are especially likely to have shortness of breath. One of the simplest things one can do to help relieve shortness of breath is to help the patient to sit up. If you have a hospital bed, the head of the bed is made to raise up. If the patient has refused a hospital bed, you can still elevate the head of the bed by placing a large cushion or two (from a couch or pillows) evenly under one end of the mattress to elevate your loved one's head, neck and trunk. A 30 or 45 degree angle of elevation should be sufficient. This is especially important for any patient with heart or lung disease.

The next basic thing you can do is to give concentrated oxygen to the patient. The Attending Physician will ordinarily order oxygen for any patient who has shortness of breath, or the hospice RN Case Manager may arrange for oxygen based on physician-approved Standing Orders for Hospice Care.

Fluid Buildup in the Lungs

In certain cases of heart failure and lung disease, there is a high probability of fluid building up in the lungs. Medical science has found that the fluids building up in the lungs can be minimized by aggressively administering certain medications (such as scopolamine, hyocyamine, atropine, and other medications, and in some cases, morphine). Morphine in combination with a diuretic such as furosemide (lasix) may be very effective when pulmonary edema is present. If there is any fluid accumulating in the lungs, the physician may order these or other medications to remove that extra fluid (See the section on - Fluid Management in Terminal Illnesses, for more information). If the patient's lungs are quite "wet" and the patient is unable to swallow, you may wish to inquire about giving the medications transdermally (by applying medicated patches to the skin) or subcutaneously (using an injectable form of medication with very small needles which are not painful to use).

Administration of Oxygen

Oxygen is most commonly given by nasal cannula which is a plastic tubing that reaches to the nostrils. It is also given by a mask which covers the mouth and nose. In both cases, the nasal cannula or mask are attached to plastic tubing which attaches to a source of oxygen: oxygen tanks of various sorts or oxygen concentrators.

Oxygen is given at a certain speed or rate which is measured in liters per minute. A 2 liter per minute rate is quite common in adults, although when there is severe shortness of breath, the rate is increased to 3, 4 or 5 liters/minute in some cases. It is very important to follow the physician's orders about how much oxygen to given per minute. In the endstage of a disease such as Chronic Obstructive Pulmonary Disease (COPD) or emphysema, suddenly increasing the oxygen to a high rate of flow could cause worsening respiratory distress or even respiratory failure, hastening death. If the patient is having difficulty, consult with your hospice RN case manager who can, if necessary, call the physician for further medical orders regarding the oxygen or other medications which might be helpful.

Care Needed When Using Pure Oxygen

When oxygen is given, it is extremely important not to smoke in the same area or building at all. Smoking, besides being extremely harmful to the patient, can accidentally cause a fire. It is important not to have any flames or candles in the room. Oxygen accelerates the combustion rate and a fire could result. There are some patients who either ignored this caution or were confused, and accidentally started to smoke when they had oxygen coming in by nasal cannula; some of these patients were burnt severely and in some cases a fire was started in the building!

If you have oxygen tanks in the room, it is important to prevent them from falling abruptly. The oxygen is under great pressure within the tank and the tanks can either explode or shoot across the room, Serious injury could result if the oxygen tanks are mishandled. The Medical Equipment Supplier who brings the tanks will teach you how to use the tanks safely.

Oxygen is an Important Comfort Measure for the Patient

Providing oxygen to your loved one will help keep him or her comfortable and reduce the shortness of breath. When patients become short of breath, anxiety can be dramatically increased which makes the problem even worse. If you notice that your loved one is short of breath and no oxygen is yet being provided, ask the RN case manager to obtain oxygen as soon as possible. In many hospices, the RN case manager can use the Standing Orders already approved by the Attending Physician to get oxygen into the home as soon as the Medical Supply company can bring it out.

If you are told that oxygen isn't necessary, even though the patient is obviously short of breath, determine exactly why the RN doesn't think your loved one needs oxygen. If you personally know a nurse in your area, ask her to come over for a second opinion. If both of you still think the patient needs oxygen and the RN is balking at ordering oxygen, demand to speak with the hospice Medical Director or contact your Attending physician directly. Insist that your loved one gets the services needed to maintain comfort! If the attending physician himself also refuses to order oxygen, you may wish to contact another physician. There have been reports of kickbacks to physicians who save money on the care provided to patients by not ordering the needed services (like oxygen) or medications. This is the same type of "cost-saving" that sometimes occurs in HMO's or other insurance plans...it benefits the agency but does nothing but make the patient suffer more.

Altered Patterns of Breathing

It is quite common for the terminally ill to exhibit altered patterns of breathing. What this means is that the patient may breathe abnormally slowly, quickly, may pause for short or very long periods (called apnea), or may breathe in irregular patterns or rhythms of breathing. Each pattern or rhythm of irregular breathing has a specific cause, meaning and interpretation which experienced hospice physicians and nurses will recognize.

Although you may find it difficult to see your loved one breathing in these ways, it may be a sign that he or she is in decline and getting closer to death, or that certain organs are failing. Longer and longer periods of apnea (pausing when breathing) can occur, lasting from five to ten seconds or even up to one minute or more. After these periods of apnea, breathing again resumes and the pattern may repeat itself. These periods may get longer as your loved one approaches closer to passing away, but this does not happen in all cases. Some patients may breathe extremely fast up to thirty or forty breaths per minute or more. These altered patterns are to be expected and do not necessarily mean that the patient is suffering due to that pattern. Sometimes these altered patterns of breathing continue for weeks or even months. It is important that you report any changes in breathing pattern to your RN case manager who can explain their significance to you.

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