“Just Because You Can, Doesn’t Mean You Should”
It’s a common phrase today, often used in reference to the decisions around advanced health care interventions and procedures that prolong life. However, the phrase also has some other useful moments, some more ambiguous ones perhaps. Most times when applying this nugget of wisdom the choices alone, outside their bigger context, all seem “good”, they seem like reasonable and rational courses of action to proceed on but when we dig into the vital details of a situation what looked “good” or at least benign on the surface – suddenly the choices can look “not so good”, even counterproductive to our actual goals and desires.
For example – CPR is a wonderful thing, in some situations. When a person is younger and has a statistically likely outcome of successful resuscitation and recovery then great! However, when we start talking about older individuals with multiple health problems and increasing frailty, things like CPR can be devastating. A seemingly “good” action may return someone to having a heartbeat but not “life” as many would prefer to define it, a bad outcome. To avoid likely bad outcome from seemingly “good” interventions we need to examine the truth of the potential outcomes and make informed decisions. We are seeing this happen more in healthcare, but still not enough. There are still a lot of difficulties around having these choices honored and helping people to understand the reality of such choices and their outcomes. Just because we can doesn’t always mean we should. Leaving such decisions until a critical moment, makes it even more difficult to gain clarity and perspective on the potential places that a “good” action can lead to a “bad” outcome.
I recently had a wonderful New York Times article come across my desk, shared by a colleague in this work – you can view the article here. This article speaks to the idea that sometimes the decision to take someone “home” for care as they near the end of their life, may not be the right choice. Wait a second – my inner hospice nurse screams in defiance of this idea; of course home is where someone should be! The issue is far more complex than just our growing societal “re-acceptance” that dying at home is the way-to-go. There are some pretty serious implications for both the person that’s dying and the family who is agreeing to care for them when you take someone home as they near the end of their life. Sure, the desire to be at home is an important wish to try to honor, and the atmosphere in which we spend our last days is often a key component of the quality experience we all “desire” in that time. I beg people to consider that location is not the ONLY important factor to consider for a successful at-home end-of-a-life experience. Below I offer a list of questions you’ll want to ponder if you’re considering such a choice. I also suggest asking your healthcare and hospice team to help you in answering some of these – prior to that bumpy ambulance ride back to your family home. (And yes, all ambulance rides are bumpy)
1.) Does the dying person want to go home?
Some people don’t want to be that burden on their family or they may be more comforted (as the article points out) by the immediacy of comfort interventions provided in the hospital. Dying in the hospital or another care-facility is possible, dying well in these places is possible too especially with strong advocates and expression of wishes. If a person is extremely bothered by the idea of returning “home”, it may not be the right choice. Discussions about what someone truly desires, their fears, what their goals for this time and their care are will be important factors in this big decision.
2.) Does the family have the ability to take them home? Is there enough time without disrupting an active dying process to do so? Are there enough resources to provide the needed level of care at home? Can you coordinate with hospice, afford outside additional help or enlist additional friends and family to support to process and time line?
That’s a big multi-part question, but a pivotal one to a successful transition to home-care. If someone is in the hospital and actively dying it can be highly disruptive, painful and difficult to transfer them home at that time. The difficulties of transfer and establishing care at home may indeed outweigh the benefits of fulfilling the wish of “taking them home to die”.
Believe me, in my ideal world I’d get everyone exactly where they want to be for the moment of their departure from this planet, emotionally, physically and spiritually – but that’s not always possible. Sometimes a person really is better served staying right where they are with loving family members enabled to be loving family members and not over-stressed caregivers. Taking someone home for care as they die is a stressful, though often beautiful endeavor. I’ve done it a lot and I’ve seen it go well and I’ve seen it go badly. I’ve supported families who were absolutely adamant that their family member needed to die at home and they pulled it off against all odds. I’ve also watched the process proceed when perhaps it shouldn’t have, to the detriment of all involved. These are things to carefully consider.
Around the clock care is hard on people, being a caregiver instead of just a loved one sitting vigil isn’t a role for everyone to take on. That’s absolutely okay, just be mindful of your own abilities and limitations! Then there’s also the fact that the family who remains has to potentially live on in that home. If there’s emotional damage done in the process that makes this exceedingly difficult or hugely complicates the grief process these things need to be considered for their potential ahead of time.
Making sure you understand the resources you have available to you and their limitations as well as if they’re really enough to keep your loved one comfortable and supported through the process is vital. Hospice isn’t an emergency service, nurses aren’t there 24/7 and a lot of the care required for patients falls on family members or privately hired help. This is doable for many but for many others it really isn’t. Understand your situation, supports, resources and please – be mindful of your limitations and needs.
3.) Can you roll with the punches? Can you deal with other people’s grief and emotional styles?
End-of-life care is never an exact science, none of us that do this work have crystal ball that reliably works. We can help you and prepare you but ultimately time-lines and exact routes people take during this time can be highly variable. I thought I was bringing my grandmother home for weeks and 8 months later she died peacefully in my home. I wouldn’t have traded that time for anything in the world but there were moments where I was pretty mad, stressed, crazed and overwhelmed about how much more I got than I bargained for.
There were also times when I just couldn’t get over how other people reacted to what was going on. Some people wouldn’t come within miles of the house. Some people had lots of criticism for the things that I was doing or urged more curative care. There will always be people in other stages of understanding, acceptance, denial and grief. That’s okay – that’s where they’re at, but if you’re a caregiver those dynamics can be pretty rough to deal with at times. Be aware of those potentials, develop some self-care strategies. If you’re going to do this engage all resources and supports so you have some time to take care of yourself and don’t forget how important that is.
I’ll tell you beyond a doubt that spending quality time at home with a loved one during their last days, weeks and/or months on this planet is an amazing gift but it’s not one that everyone is ready for, equipped for or able to do at specific points in their lives. That’s okay! There are alternatives and there are ways to make them beautiful and help a loved on who doesn’t get the choice to “go home” be very comfortable, loved, appreciated and supported through their death. Location isn’t everything, not always. So remember if it’s not possible – focus on what is and maximize your experience on those goals and ideas.
I’ll leave you with this thought: In bringing my Grandmother “home”: she only got part of her wish. She came to my home, not hers. Her house was a small little house 2 hours north, far from my resources and supports where I would have been relatively isolated in my caring for her and away from the people and things that could keep me going. I had to make the choice between fully honoring her wishes and making it the most successful situation for both of us. In the end I truly believe we both won in that decision but yes, there were days when she was adamant that she wanted to go home to her house and we traded words that were full of hurt and regret. Even those moments were okay, she didn’t get exactly what she wanted, most of us rarely do at every turn in life, but she got something amazing and I preserved a tiny shred of my questionable sanity in the process. We had the hard discussions and the elephant in the room merely walked on our toes from time to time, we never gave it a chance to squash us though! We figured out where we could and we should and where we could but we shouldn’t, we didn’t!