Quick note: I am so sorry for being away for a few weeks. My life became quite hectic, but it’s starting to level out again. Here’s to consistency from here on out! 🙂
Most of us, when we really think about it, don’t want to die in the hospital.
But despite many families beginning to have open conversations regarding end-of-life wishes, people still do – often – and there are a variety of reasons why.
Some hospital deaths are tragic and sudden. Some deaths occur after removal of ventilations. Others are related to the inability to transfer hospice patients home to die because it would disrupt their comfort or safety.
Most often, medical professionals can safely and adequately transfer hospice patients home to die, reflecting their final wishes. But there are still a handful of patients for whom this is inappropriate.
In my experience as a inpatient (in the hospital) hospice RN, these end-of-life patients either depend on intravenous pain medication for comfort, a need for high quantities of oxygen, a lack of a safe home environment, or the fact the dying process is so far along that medical transport itself could hasten death.
Therefore, it might be in the best interest of the patient and family to stay in the hospital.
That’s why our units exist.
If this is the case, know that we, as nurses, doctors, chaplains, music therapists, and social workers, want to help you make this experience as peaceful and as comfortable as possible.
That’s why, when I have time, I like to tidy up my hospice rooms, making them as cozy as possible. And I want to empower you, as family members, to do the same.
Why? Well, dying people often become confused and agitated at times. Being in an unrecognizable, sterile place like the hospital, might only increase this confusion. But by creating a personalized environment within your hospital room, you take some of the fear of dying away from your loved one, and from your whole family.
It does not replace the necessity for medication and other comfort measures, but it can ease this painful transition a little bit for everyone.
And it’s easy, so as long as your hospital will allow it – why not?
If you find yourself in this situation, talk to hospital staff about turning your cold hospital room into a home-like vigil. They likely already have resources available in-house to make this happen.
1. Ask about Softer Lighting Options
After even a short stint in the hospital – you know about the annoying fluorescent lighting. Not only can these lights cause eye strain, but they don’t facilitate that peaceful environment that softer home lighting offers.
That’s why my workplace has acquired some simple lamps for our hospice/comfort care patients. The soft lighting transforms the room from a highly medical, fear-inducing space, to one that exudes comfort and relaxation.
We set these lamps up on bedside tables, shut off the overhead lights, and open curtains to bring in natural light.
Check with your nursing staff to see if there are any lamps available in the hospital. If your loved one isn’t in an inpatient hospice unit, your nurses may need to coordinate with that unit. However, it could also be that your hospital doesn’t have these resources on hand.
In that case, talk to your team about bringing in your own lamps. Hospital policy may have restrictions on what is acceptable – certainly high-watt bulbs or candles would not be tolerated in the hospital.
This simple act can make a positive impact on the whole experience.
2. Bring in Treasured Items (and Pets) from Home
Now, while I do not encourage you to start moving your furniture into the hospital, I do think it is important to bring in some items of comfort. And if your family has been in the hospital for awhile, you likely have already done this.
Common items (though there are many more) that I have seen brought into a dying patient’s room:
- Blankets, knitted quilts, and prayer shawls (my workplace also has prayer shawls on hand, so ask your nurse if your hospital has any available)
- Nightgowns, pajamas, and socks (and bring them home to do laundry): cut the backs of these clothing items to mimic hospital gowns to minimize painful movement in bed and skin breakdown from wrinkles
- Favorite pillows
- Religious materials: Bibles and other religious texts, rosaries, sacred jewelry or rocks, clean head scarves and hijabs
- Stuffed animals: these can be especially comforting for patients with dementia
- Favorite music (preferably something calm/soothing): ask your nursing team if they have a music channel, CD players, or if they’d let you bring in your own
- Live plants: ask your nurse before bringing these in, some units do not allow them for infection risks
- Your dog: I know animals are not items, but bringing in your loved one’s pet can be just as healing for your loved one as it is for their animal companion – but again, do confirm with your nursing staff before bringing in your furry friend
I have witnessed many families nest by bringing in wonderful items from home, and setting them up neatly throughout the room.
This is your process, so personalize it.
We don’t know what you are going through, but we know it’s tough. So, we are here to help you. We can figure out sleeping arrangements for the family and create a relaxing space, all the while ensuring your loved one is without pain or suffering.
3. Feed Your Loved One Traditional Foods and Flavors
The universal truth about hospitals is that the food is generally… underwhelming. Delicious options are often limited.
Especially for your loved one who might be developing swallowing problems.
Therefore, it’s important to cook home-made family favorites for your dying family member. Food is such a comfort, even at the end of life. Flavors and aromas from our childhood evoke powerful, visceral memories, and soothe numerous anxieties.
My friend brought his dying Filipino father traditional foods of his upbringing, but because he no longer could swallow solid foods, he blended these traditional dishes into a flavorful soup. His father, who was barely eating, visibly brightened after tasting these home-like foods. And even though his father did eventually die, this memory serves to heal some of his grief.
The dying don’t usually eat a lot, so why not make their last few sips vibrant and recognizable?
The hospital can do a lot, but it can’t make Grandma’s family recipe.
4. Take Advantage of Comforting Smells
Aromatherapy is not for everyone. Some patients get nauseous from smells, so ask your loved one, if you can, before using any kind of essential oils.
But some people swear by them, and while there is little scientific basis for aromatherapy, I have used them to complement medical interventions in hospice.
And actually, our hospital has aromatherapy on hand.
We frequently use lavender, spearmint, and mandarin orange patches. The uses vary. For example, while some nauseous patients prefer nothing scented, others feel some relief from nausea with a spearmint patch on their gown. If someone is feeling anxious, a lavender patch can help calm them down.
So, that’s the aromatherapy that I usually suggest to hospice patients. I find that lavender, and other calming scents, can assist in the relaxation process while still creating a more personal home-inspired feeling.
While beautiful scents do not serve to replace comfort medication, you may find them helpful to facilitate a peaceful environment necessary during the end of life.
5. Turn off Unnecessary Beeping
If your dying loved one is in the Intensive Care Unit (ICU) they are likely attached to various monitors with alarms that cannot be silenced.
But outside the ICU, in an inpatient hospice unit, we typically remove medical devices from the rooms when they are no longer necessary. We have found, anecdotally, that much of these monitors aren’t serving you or your loved one. Knowing these numbers won’t change the outcome, and can actually cause distress for both you and your loved one.
And it’s thought that hearing is the last sense to go, so we speculate the endless beeping of machines can be uncomfortable for your dying loved one.
But removing these devices from the room is not always easy to wrap your head around.
Knowing that your loved one is so sick that they don’t need to be monitored anymore can feel downright awful. It’s just another reminder that the inevitable is near. That’s scary. So, know that I say this with extreme sensitivity, and if the monitors provide you with comfort – that’s okay, too!
However, there is a good benefit to minimizing the beeping from monitors.
The reality is that dying leads to physical “abnormalities.” I put it in quotes because they are only abnormal for healthy people. But unusual vital signs and heart rhythms are actually normal during the dying process.
But our monitors target these “abnormalities,” and the dying body is not going to behave like the monitors want them to act. Thus, endless beeping.
If you were at home, you wouldn’t have any of these monitoring systems that we have installed. Your anxiety is only provoked by their removal because it’s a reminder that they are no longer useful to your loved one.
But when the machines are out of the room, you no longer have to suffer from anxiety every time an alarm goes off. You don’t have to feel a hopelessness as you stare at these screens, watching numbers and patterns go by, unsure of what they mean. And your dying loved one is no longer jolted out of peacefulness and comfort by the constant noise.
Taking away these monitors promotes a home environment – and reduces the sterile feel of a hospital room.
And it helps you focus on the humanity of dying instead.
Although there are times when dying in the hospital cannot be avoided, it can still be peaceful. With the help of your hospice or medical team, your loved one will be able to comfortably transition from life to death.
And you, as family, are a huge part of this.
I empower you to ask your nurses how you can make the hospital room a little less clinical and a little more like home. In fact, they might already have lamps, prayer shawls, and aromatherapy available.
Creating a relaxing hospital room that is personalized to your family member is an easy way to facilitate a good death – and it doesn’t require a lot of energy.
But in the end, the most important thing is being there for your loved one. Sitting vigil and telling them you love them. Everything else is just an added bonus.
Comment below if you’ve had a loved one die in the hospital, and if you had the opportunity to make the room your own. Also, let me know if you have any other suggestions related to this topic!