Providing End of Life Care with Compassion and Grace

Taking care of patients at end-of-life can be one of the most challenging, heartbreaking and rewarding aspects of your career. Knowing how to handle these situations and care for these patients (and their families) will help alleviate your anxiety so you can be completely present for those in their time of need.

The decision to transition to comfort care or hospice

The difficult decision to cease life-saving efforts and transition the goal of care to comfort is one that is typically made when no improvements in condition have been seen and are not expected, no possibility for quality of life remains or the patient is experiencing grave suffering due to therapies and treatments and choose to let death occur naturally.

This is typically not a decision that occurs abruptly. It will usually evolve over days, as the family and/or patient discuss treatment options, response to therapies, assessment findings and future prognosis with the physical team and the nurses. As the nurse, it is not in your scope to discuss prognosis or diagnosis, but you can certainly communicate with the family and patient to keep them appraised of the patient’s response to treatment, as well as your pertinent assessment findings.

For example, let’s say your patient has CHF and is struggling to breathe. The physician has ordered Lasix and your patient is currently on 100% non-rebreather. You give the lasix, which has little effect, and you are unable to titrate down the oxygen. You can certainly discuss this with the family so they are aware that this particular treatment modality did not have the desired effect. Or, let’s say your patient’s CPOT score indicates he is in pain…you’d want the family to know this (and also what you are doing about it) so they have accurate data as they make a very difficult decision.

What’s the difference between comfort care and hospice?

Both comfort care and hospice are treatment options for patients who are in the process of dying. Comfort care typically refers to in-hospital care of a patient for whom the focus has shifted from attempting to cure the patient of their disease to simply keeping them comfortable.

Hospice care has the same goals (alleviation of suffering and symptom management) but brings with it the support of the hospice care team which can include RNs, chaplains, social workers, home health aids and the like. Many patients on hospice are able to leave the hospital and either go home or to a board-and-care.

Comfort is the focus of end-of-life care

When placing your patient on comfort care, one of the most important things you can do is clearly communicate the process with the patient and family so they know what to expect. Let them know that you will be turning off life-sustaining medications, removing the ventilator (if they’re vented) and removing any supplemental oxygen. At this point, most family members will ask you about suffering and how long it might take for their loved one to pass. In some cases, your patient will still be alert and asking questions about their own dying process. Reading this post can help you understand the special anguish that comes with caring for patients who know their end of life is near.

As for suffering, I assure families that their loved one’s pain will be managed well. Most patients on comfort care are placed on a morphine infusion, though sometimes you’ll simply give prn pain medication every couple of hours. I explain that morphine will alleviate their pain as well as lesson feelings of “air hunger” which can be a great cause for anxiety.

Patients on comfort care will also typically have medication for anxiety and an anticholinergic to prevent excessive oral secretions. You will avoid painful treatments like deep suctioning (oral suctioning is okay) and may even turn your patient less often if it appears to cause them pain. Basically, you will shift your entire focus from “curing” this patient to lessening their suffering and providing them with the beautiful gift of a peaceful and comfortable death.

What to expect in the dying process

Knowing what to expect as your patient dies can help you be prepared emotionally and help you prepare the family as well. Though every patient is different, you might want to let the family know how the patient’s breathing patterns will change and that they may hear a sound commonly known as a “death rattle.” Though I don’t call it this to my families, I may say something like, “You may hear a sound that seems as though they have secretions in the back of their throat. This is common and is just a part of the process. His pain will be very well managed, but if you see any signs he is in distress please let me know.”

The other big question your family members will have is “How long?” It really depends on the patient. If you’ve got someone who is on max vent support, they’re probably going to go pretty quickly. If they’re all on max vasopressors, then it’s going to be a rapid decline. In other, less severe cases, I’ve seen patients linger with an O2 sats in the low 80s for days…it really just depends. Based on my clinical experience, I try to give the family members an idea of what to expect, but I always temper it with the statement that “Everyone is different, but I can definitely let you know when it looks like he’s close.”

On the monitor you will typically see the following changes as your patient passes:

• Dropping O2 saturation
• Varied respiratory rate…possibly tachypnea followed by hypoventilation
• Dysrhythmias, widening QRS until eventually asystole, possibly PEA to asystole
• Dropping blood pressure

Prepping your patient and family for a peaceful death

If your patient is intubated, we typically offer families the option of leaving the room while we remove the ETT as it can be a little intense emotionally. Sometimes they want to stay, sometimes they gratefully accept the option to step away for a bit. If the patient is on a morphine gtt, you will want to get that medication infusing BEFORE you remove the ETT, so that the patient is comfortable once that tube is removed.

Knowing that the patient could pass quickly once the ETT comes out, I try to get my patient prepped in advance. I make sure he’s clean with a fresh gown and fresh linens. I place his arms on top of the blanket so the family members can hold his hands. I remove as much medical equipment as possible, and turn off the monitor in the room. I remove any unnecessary tubes/lines/monitoring equipment and basically try to make the environment as soothing as possible.

When the tube comes out, I give his mouth a thorough swab/suction and then RT moves the ventilator out of the way, giving the family unimpeded access to their loved one. Many times, the patient will occlude their airway a bit causing that “death rattle” sound. Other times, secretions are audible, so I might give an anticholinergic (typically atropine drops sublingual).

Providing compassionate post-mortem care

After your patient dies, determine if the family is going to continue coming in (or if they’re not there yet and are going to come in), take this time to make sure your patient is fresh, clean and positioned to look as peaceful as possible. I find this typically comes into play when the patient has been coded and the room is a disastrous mess…get your patient clean, the room tidy, etc… You should also ask the family if they have any cultural practices they follow and ensure they are able to perform these very important rituals.

Once the family leaves, you are faced with the task of continuing to care for your patient by providing compassionate post-mortem care. When I am getting my patients ready for the morgue, I talk to them, I wish them well, I handle them gently and speak to them with kindness in my voice. This is not the time for joking with your coworkers, making fun of ANYTHING at all, sharing unit gossip or disparaging the deceased in any way shape or form. The body you are placing into a white bag was a vehicle for someone to live their life. That body was the greatest gift they ever received and you should treat it as such.

In most cases, you will remove all tubes and lines…Foley catheters, NG tubes and IVs. Sometimes central lines will be left in place to prevent the body from bleeding excessively, but if it’s feasible to remove them, go ahead and take those out as well. You will place an identifying tag on the patient’s toe, on the outside of the bag and also on any of their belongings.

Based on your facility policy, you may be required to accompany your patient to the morgue. Cover the gurney with a clean sheet and take the route that will bring you into contact with as few visitors as possible.

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Get this on audio in Podcast Episode 99.

Do you have a special tip for providing compassionate end-of-life care? Share it with us in the comments below.