I have had death on my mind a lot lately. In some ways this is not surprising, after all it is an inevitability in the career I have chosen that I will come across death in all it’s guises. However it is not the pointless deaths in car crashes, motorbike crashes, stabbings and so on that I have been dwelling on, although these play a large part in my everyday life. Rather it is the is the inevitable deaths, the natural deaths of those at the ends of their lives that I have been dwelling on. In my opinion paramedics (myself included) do not deal with these situations very well, despite the fact that we are called to them on a daily basis.
In many ways it is not surprising that paramedics are not good at dealing with the dying. We are good at dealing with the newly dead; indeed we should be experts at resuscitation. We are often very good at dealing with those who are dying who really shouldn’t be; after all, this is exactly what we train for, our entire raison d’etre. We work long and hard at knowing how to cannulate, intubate, defibrillate and resuscitate. We read, we learn, we drill and we take pride in our “saves.”
Unfortunately not everyone can be saved. Perhaps not everyone should be saved. I am by no means a medical utilitarian, but it seems to me that an awful lot of our time and effort is put into resuscitating those for whom resuscitation is futile and for whom ACLS was never designed. The 40 year old sudden cardiac arrest in the street? Sure, we should throw everything at her. The 90 year old with advanced vascular dementia, bed-bound in a high care unit in the local aged care facility? We often do end up throwing everything at her, but to what end?
I suspect that for many of us it is the latter type of call that makes up the lion’s share of our calls. Yet our entire history, education and culture leaves us singularly ill-prepared to deal with them. We are geared towards dealing with the cardiac arrest or peri-arrest patients aggressively. Whilst these calls may fit these criteria, I think a distinction needs to be made between the patients who are dead/dying of a potentially reversible, possibly isolated pathology and those who are simply dead/dying as the natural end to their life.
I know that this is something that causes a great deal of anxiety in most paramedics, and this too is natural. There is a wide spectrum of patients who could fit into either category and I don’t think most paramedics feel comfortable in making such determinations. We are frightened of doing the wrong thing, frightened of letting a patient die who we could have “saved” and we are all (rightly or wrongly) worried about being sued (or in our thankfully less litigious society, explaining ourselves to the coroner)
However I am sure that I am not the only paramedic who has turned up at a scene to find family members asking for help when their obviously end of life loved one is dying. I have always been perplexed and upset at the apparent callousness of family members who want us to inflict the pain and indignity of resuscitation on their loved one when the best outcome that can be hoped for is a brief ROSC or perhaps a short stay in the resus cubicle before the inevitable. I often wondered what was wrong with these people, without realising that the problem was actually me, or rather how I was communicating with them.
I recently listened to Ashley Shreves on EMCRIT speaking about palliative and end of life care (there is a difference) and I have to say it was an amazing eye opener for me with regards to how to talk about end of life care and goals with family. This is an absolute must watch video for anyone who is involved in care of the critically ill or dying.
There is some specific clinical stuff on managing dyspnea and so on, which may or may not be possible depending on the system under which you work. The real benefit though is in talking about how we should be communicating to families, which is the crux of the issue for me and I suspect for many paramedics.
The key to communication in these settings is to remember that the family are (probably) not medically trained. They do not understand medical jargon and they certainly do not attach the same meanings to words that we do. From the accompanying editorial:
- Three things we should never say:
- ”Do you want us to do everything?” Of course they do, but if you offer “everything” who wouldn’t want mom to get everything? Could they say….”no, whatever you do , don’t do everything for mom!” This also makes the family feel that everything (whatever that entails) is reasonable or possible. Instead use the ‘Pal Care’ approach and say, “What would be most important to you and your mom now?” On the basis of what you hear make a reasoned professional recommendation.
- “Do you want us to resuscitate her?” This implies that we think it is possible or reasonable to do this! Since you ask this it must be reasonable. “You can just bring her back? Great, go ahead!” Use natural death language. “So it sounds like your mom would want a natural death? When her heart stops we will not interfere with that process”
- ” I am so sorry, there is nothing more we can do” There is a lot that can be done and it involves maximizing comfort and minimizing suffering. They need palliative care or hospice.
We may also need to be able to use our medical knowledge to guide the family towards appropriate decisions. Talk to them about the patient. Not just about the medical situation but about the patient themselves. Find out what is important to the patient, what they would want in the situation. The patient may have discussed their wishes with the family, but in the emotion of the situation the family may not be thinking of that. I know we are wary of paternalism and want to respect patient and family wishes, but we still need to give advice and guidance where necessary.
So if we aren’t going to jump up and down on chests and stick tubes in people, what can we do? Well, there is actually plenty we can do and I have found that helping families deal with difficult situations can be extremely rewarding.
There are essentially two situations that we will encounter. One is where death is expected from a known pathology, such as cancer or COPD. The other is where death is not expected per se, but appears inevitable (the septic pneumonia pt who is 90 and already in high care at the nursing home)
We are often called to scenes where the first situation is playing out. When this occurs we need to remember that we are almost dealing with two sets of patients. One is the actual patient patient. They may need some level of care, symptom control or referral to someone who can provide what they need. The other set of patients is the family. We need to be mindful that this is an extremely emotional and stressful time for all involved and we need to extend our care and compassion to all. We are often called because the carers of family just don’t know what to do in a certain situation, or they may have a specific need that they perceive paramedics as being able to fill, be it symptom control or transport to hospital/hospice.
Take the time to find out exactly what the family and patient needs rather than just dragging the patient off to hospital. If they need symptom control then do all in your power to provide it. You may be able to consult with the palliative care services to provide care in the home or to arrange a home visit from a locum. In some cases you may be able to provide some care in the home under the direction of a physician. In other cases it may be appropriate to transport the patient to a specific hospital that is dealing with them or to the nearest emergency department. One important thing to remember is that even though the patient may have an incurable or end stage disease, treatment for quality of life may still be aggressive and include surgical measures in some cases. Don’t fall into the trap of thinking that there is nothing to be done for the palliative patient or that any intervention is futile.
In the second situation there may be a little less non-traditional care that we can provide as paramedics. In the absence of clear direction from the patient or family/power of attorney we are perhaps more limited in what we can offer. It may be possible to speak with family and the patient’s own doctor and arrive at a plan that is appropriate for the given situation. However this is often not possible for various reasons, so it may be most appropriate to transport to hospital to get medical assessment, treatment and planning put in place. How you actually treat the patient in such situations will vary according to your protocols, where you work, and by your own comfort level in managing such situations. You need to discuss with family and/or the patient if possible and let them know what you expect will happen and what you think is the appropriate course of action. You obviously will be constrained by protocol and by their wishes, but this does not mean that every 90 year old with pneumonia and respiratory failure should be intubated. Do not forget that anything we do in the field will to some degree set in motion a particular course of action that may or may not be entirely desirable in the long run. (Oddly enough, my protocol for RSI asks me to consider baseline function and prognosis before intubating, yet my arrest protocol does not do the same for resuscitation…)
With that said, we are not physicians. We may not feel comfortable in dealing with these issues, or we may be bound by protocol to certain actions. There is no shame in providing the best level of care that you can and seeking assistance from a medical practitioner. In these cases the idea of a temporising measure may be worth considering. You may think that intubating the 90 year old is not a good plan, but you may be able to provide non-invasive ventilation as a comfort/temporising measure until further decisions can be made in consultation with family and the doctors. Don’t forget that we want to reduce suffering as much as we can, not increase or prolong it with invasive procedures.
I suspect that we need to do more on an organisational level to deal with the needs of the palliative or end of life patient. Our entire ethos is geared towards all resuscitation all the time, but this neglects a large proportion of the population in whom resuscitation is not desired, futile, or even possibly harmful. Most of our protocols have input from physicians who are expert in the particular fields, be it cardiology, trauma, neurology and so on. Perhaps it is time to get some palliative care specialists on board to help us set out systems to deal with these patients. It is not unreasonable to expect that with an aging population we will be seeing more and more of them.
Aside from the podcast above there are other resources out there that may be useful to paramedics. Most of the ones I have been looking at are geared towards the emergency physician, but the clear parallels between our roles makes crossover easy.
Check out EMCRITs own Palliative Care Podcast which contains some excellent pearls of wisdom, as well as the article by Ashley Shreves and Ken Ouchi at EP Monthly. This article is well referenced and meshes well with Ashley’s podcast. There is also the EPERC website which contains many resources to assist in dealing with end of life and palliative patients and the Pallimed blog
Dealing with the palliative or end of life patient can be difficult or frustrating for the paramedic, but it need not be. The difficulty and frustration comes from our own expectations and worldviews being out of sync with the needs of the patient. This is probably a function of our training and education. However with a little effort and thought, helping the patients and families in these difficult situations can be extremely rewarding.
As always, let me know what you think via comments, email or twitter.