Just my observations after twelve years of hospice nursing. What I have to say is not gospel so don’t take it as such.
Every culture/religion/society varies in its approach to death, or acceptance/nonacceptance of death. View of death. The way we treat death. The mythology, religious beliefs and folk beliefs associated with death.
That’s just the way it is. Some things will never change. Bruce Hornsby
My Filipino families were amazing loving caregivers. But they didn’t like to have family members die at home. Scared of ghosts. I’m serious. Every Filipino family I worked with was concerned about lingering spirits. Because of this, they were reluctant to bring a loved one home from the hospital. Most hospital discharge planners with whom I coordinated care did not understand the reluctance. They didn’t understand it at all. I get it, I mean, who comes out and says– I’m afraid to take dad home. What if his ghost haunts me?
But I knew about it. Remember, I spent a lot of time with these families. I knew what they were worried about.
In one case, after the grandmother died at home, the family was so distraught over the possibility of her ghost hanging around that within a week of her death they’d sold their house for well under market value and moved clear across town. In another case, my patient, an American serviceman who had married a Filipino woman, had to constantly reassure his wife he would not haunt her after his death. That was her only hesitation about having hospice in her home. She had no fear of caring for him, no real fear of death. She was worried he’d come back to haunt her. I have this vivid memory of the two of them sitting on the couch. He held a bible in his lap and he could not stop laughing. “I am not going to haunt you,” he said. “I swear on this bible I will not haunt you.” She never really believed him. She too sold her home after he died.
Chinese families tended to be pretty pragmatic and there were always many family members around, multiple generations. However, I learned two things– if the family was Buddhist, there would be lots of prayers, incense, candles– there was a tremendous amount of spiritual support for the dying patient. Death was an amazing peaceful experience. For me too.
If the family was not Buddhist, more, you know, Americanized, while there were loads of family members present, I noticed a distinct reluctance to ever, and I do mean ever, discuss death. I was surprised by the number of times a son or daughter instructed me to never ever ever tell the patient he or she was dying. I did my best to respect those wishes, but, you know, if the patient flat out asked I had to tell him or her the truth. I had to. I’m not gonna lie to my patients. And I always made sure the family knew that. Chinese families reminded me of…
Now, I’m Jewish so I can say this. Jewish people, modern atheist/humanist/reform type Jewish people, do not like to talk about death and in fact, rarely did I have a Jewish patient. Seriously. Jewish people tend to treat an illness to death. Most Jewish people die in the hospital. Hey, I’ve had relatives put on hospice, pretty much at the very last minute, and it was like pulling teeth to convince my own family that my aunt or uncle was going to die despite every available advanced medical intervention. People die. Jews think that’s just not right. (I’ve never worked with super orthodox Jews so I don’t know how their acceptance of death differs.) I just know that a lot of the Jewish patients and families I worked with didn’t believe in an afterlife and making the decision to put a patient on hospice was a terrible guilt-ridden struggle. As they stated, and I quote from so many patients and families, they felt like they were “giving up”.
Heck, one of my aunts begged for hospice and her husband (my step uncle) refused. He insisted the doctors treat her, as in forever. He kept demanding a cure, insisting the doctors find out what was wrong with her and fix it. I remember one exasperated doctor finally saying– “What’s wrong with her is she’s dying. I can’t cure death.”
Let’s face it. Sometimes death is the cure for what ails you.
Hispanic families? No problem. They seemed to accept the fact that death is a part of life. People get old and die. Most of my Hispanic patients and their families barely needed me. They got it. They totally got it. I actually felt like my visits were a little intrusive. These were private people and they could pretty much handle anything that came up. I just made sure they had the medications and equipment they needed. Most of my Hispanic families already had a support system in place– large families, their church and a priest. These were always the easiest patients to care for. They died in the arms of their loved ones, literally.
The fun thing about caring for Hispanic patients? The food. They were always cooking great stuff. There was a sense that even if the patient could not eat, the smells of traditional Hispanic cooking made the person feel better. It’s true. It does. It did. Sure as heck made me feel better. I loved visiting these homes. The scent of that food made everything so… homey. So warm and inviting. I swear the smells coming from the kitchens were like pain control magic for my patients.
My African American patients often faced a different set of challenges. I generally found the initial response to a hospice referral to be anger, as in– why are you not pulling out all the stops to treat my mother or father? Is it because we’re Black? The anger didn’t usually come from my patients, it was usually the kids. My patients knew how sick they were. There was no fooling them. They totally knew they were dying. Once things calmed down and we were all on the same page– it was smooth sailing. Everyone rallied, called in the troops, pulled together. Some of my most cherished memories are of the hours spent with my African American patients and their families. My great grandmother was mixed race. My parents and grandparents experienced discrimination for being mixed race AND Jewish. I get it. Like my dad said, “Someone will always have a reason to hate you.” I understood the initial anger and suspicion. Hey, when I was a kid somebody painted a swastika on the side of our house in blood. Another time somebody burned a cross in our front grass. Good times…
Super religious types. Now here’s where things get interesting. One would think super religious types– those people who are constantly talking about god and heaven– would have no fear of death, might maybe even look forward to heaven. I rarely found that to be the case. It was almost as if the reality of death forced them to suddenly question their previously unquestioned beliefs and we (yes, I include myself because I was usually by their sides) experienced a major spiritual crisis near the end. Definitely not what I expected.
But it was even tougher for the super Buddhists – not the actual Buddhists but the American formerly Christians or Jews or atheists who were now Buddhists or spiritual adepts or vegans – they totally freaked out at the notion of dying. Thought they were so spiritual it would never happen to them. I’m not making this up. I once had a vegan patient say to me– “But I can’t have cancer. It’s not possible. I can’t die. I’m a vegan.” I had a Buddhist (formerly atheist) patient tell me– “But how can I be dying? I’m the most spiritual person I know. I’m not supposed to die.”
Well, as a hospice nurse I bring tidings of woe along with comfort and joy. We all gotta go sometime.
It always worked out okay in the end. I mean, they worked it out. In the end everybody works it out in his or her own way.
As I said, the above are not gospel, merely observations, things I noticed in my twelve plus years of caring for hospice patients. For me it’s all about respect. I respect the way people die.
So beginning Tuesday One Foot In Heaven, Journey of A Hospice Nurse will be available on Amazon for free for your kindle. The paperback version is free as well if you belong to Amazon Prime.