Living with the dying

July 28, 2010

One of the nurses from Patt's hospice care team interacting with her

Before I met Patt, I had no idea what it was like for someone relatively young to be “ready” for death.

Her indomitable spirit and joyful nature helped ease the suffering for her and her family, but a lot of credit goes to the nurses and the hospice care team who ensured her every need was taken care of until her last breath.

In interviewing her case manager, the one question I kept asking over and over was: “Why do you do this?”

For me it was extremely hard to wrap my head around the fact that someone would want to subject themselves to the kind of emotional turmoil hospice care brings.

It’s not just about providing support to the patient, it’s about taking care of the entire family and group of friends who are about to lose someone they love.

And they’re not even your own family!

How do you prepare them to cope with the emptiness?

And why would you want to take on that burden on your shoulders? How could you give so much of yourself and not be sapped out?

What about your life? Your family? Your emotional issues?

Why would you choose to add another layer of complex and multiple emotional demands above what you cope with as a “regular” nurse?

“In hospice you focus on the patient’s comfort and patient’s safety,” said Maria, Patt’s case manager. “Not that you don’t do those things in a regular nursing role, but with hospice that’s your major focus –- the disease no longer plays a role any more. It’s all about the person.”

Maria had been a nurse for 25 years before opting for the hospice care field.

“I left bedside nursing because you’ve got 10 things going on at the same time and you don’t have the time to give the patients the care and the attention they really need,” she explained to me. “Hospice has it all. It has the challenges: you’re symptom managing, you’re providing the care and attention … plus you’re just given those extra tools that you don’t have in the other aspects of nursing. In hospice care we have to keep the patient as comfortable and as safe as possible.”

Hospice also provides the opportunity to have one team for one person.

Take Patt’s example.
As case manager, Maria oversaw Patt’s care, did her physical assessment every time she saw her and made sure that Patt was pain-free and comfortable.

“In the beginning, she was able to do more for herself,” Maria recalled. “But she came to a point where she was no longer able to get out of bed, she was not able to bite because she lost strength in her jaw, she had to sit in a certain position to be able to swallow, breathing was another focus as her lungs needed to be properly oxygenated, and she had sensitive skins so she was very prone to bed sores … so my job was to watch and constantly assess what she needed help with.”

The other members of the team included a home health aide, a doctor, a bereavement counselor for the family, a volunteer to run errands or ferry Patt’s friends over so she could meet with them, a chaplain who comforted Patt in her weak moments, and a masseuse, who would always get the same response from Patt — “Cool!”

And this was the same team that had been there for Patt since the day she joined hospice care.

When choosing hospice care as her service area, Maria considered this aspect deeply: hospice allowed her to fulfill her role as a nurse — the person who cares for, supports, and helps patients on a one-on-one basis… all the things she went to nursing school for.

“I can now focus on the patient as a person and provide them support not just medically, but spiritually and emotionally,” she said.

But what about dealing with death all the time? When you start treating the patient as a person and get invested emotionally, doesn’t it hurt you so much more? How do you cope with that day in and out, I asked her.

“It depends on how you see death” she replied calmly. “You see, for me personally, I don’t see death as a negative. Of course you are going to miss the person. But because of my philosophy and the way I see death -– or this process of dying — I see it as a transformation and not at all as an ending. The person that’s leaving us is still going to be –- the spirit’s going to go on living and experiencing a different energy than we know of on this planet and it’s not the end – just a continuation…it’s just going to be different.”

It helps for Maria to have this outlook because this is how she presents it to the family of the patient.

“I give them the emotional support for the loss that they’re going to have to experience,” she said. ” So it has to be in a very positive, very structural, concrete form. I tell them that our energy never dies. A lot of people can relate to that and some people can’t.”

It’s the perfect example of empathy, where Maria meets the family and the patient where they are emotionally.

“It doesn’t have to be a doom and gloom kind of situation … not at all,” she explained. “Most of the time what I encounter with a patient is fear and resistance … on the one hand they want to die and on the other they don’t. What I try to do is build trust, give them reassurance and comfort and let them know that they’re in good hands.”

Despite hearing Maria’s calm voice detail all of this matter-of-factly, I couldn’t help wonder what impact it must have on her.

If I were in her place, I couldn’t stand to look into a dying person’s eyes, make a connection with them, prepare them for death, provide emotional support to their family, and not be a complete wreck myself.

And to do it not once, but as part of a daily job? With a case load of 14 patients? That’s right — 14 patients!

The key is to not allow for co-dependency, according to Maria.

She drew a line when she joined hospice care — one that she is not willing to cross over.

“I won’t go overboard for a patient,” she said shrugging. “I won’t be up all hours of the night. My cut off time is my cut off time; after that someone else is going to have to take over. If I am off that day, I don’t answer my phones. If there’s a problem somebody else is going to have to deal with it. I have to do that so I can continue to nourish the people I need to take care of.”

Part of her coping routine also involved going to a gym a few times a week, meditation, prayer, and practising Reiki.

“All my cases aren’t as intense as Patt,” she reminded me. “Some of them are in nursing care homes, so professionals are already taking care of them …. and then you know, age also has a lot to do with it –- having a dying 37-year-old versus an 80-year-old –- there’s a big difference there.”

As dismal a picture as I painted in my head, Maria kept coming back to me with positive energy.

“I don’t feel like I am just giving all the time,” she said. “I feel like I am getting a lot in return because I am being taught how to live, I’m being taught how to die, and I’m being taught what’s important in life … to just let go of the small stuff.”

Her saying that made me understand the how behind all my whys.

Maria drew strength from her experiences with these people — people, who in the last few days, weeks, or months of their lives had started developing a new perspective.

When you know exactly how much time you have to live, everything changes — relationships, priorities, aspirations…

But why do you have to wait for the end to reprioritize your life?

The biggest takeaway for me lay in Maria’s last insight: “Life happens right now –- not tomorrow not yesterday, but just this second.”

Death is inevitable — some of us know when it will come, some of us don’t.

But this is an important message for all of us: Cherish what you have, spend time with your loved ones, and live your life now.

P.S. While you’re at it, give a tip of the hat to nurses.

16081BD1A60533E0F1173D28DE4F0D3F Living with the dying

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7 Responses to Living with the dying

  1. Shachi ThakkarNo Gravatar on July 28, 2010 at 10:32 pm

    Such a powerful message! Nursing is a very noble profession….

    • MansiNo Gravatar on July 29, 2010 at 2:59 pm

      It truly is, Shachi. Hats off to all those nurses who go above and beyond…

  2. S.R.AyyangarNo Gravatar on July 29, 2010 at 9:03 pm

    We treat the doctor to be a God sent ignoring the nurses who relentlessly toil day and night to look after the patient.

  3. BillNo Gravatar on July 30, 2010 at 4:01 am

    Thanks for continuing this story. I dealt with Hospice when my Dad died & was at my parents house for most of the week of his death….long story but they are amazing people & they rarely get enough credit for what they do.

    Love to you for making it through this set of stories, I hope it inspired you to live in the “now”.



    • MansiNo Gravatar on August 4, 2010 at 11:41 am

      It truly did, Bill. I feel grateful for having had the opportunity to witness and experience such compassion and such passion for life.

  4. Rishi BNo Gravatar on July 30, 2010 at 7:14 am

    i’m speechless…. i’m just gonna share it and let others read on..

    A Crooked Smile

    • MansiNo Gravatar on August 4, 2010 at 11:39 am

      Thanks, Rishi.


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