Part of the Transforming Life as We Age Special Report
My 55-year-old brother died last month. For the past few years, Patrick had a chronic lung condition — recently diagnosed as nonspecific interstitial pneumonia with fibrosis — that he managed at home. Recently, his breathing became much more difficult. Despite the assistance of oxygen, each breath was hard work.
Eventually, he was admitted to the hospital. In the intensive care unit, he had tubes hooked up to machines with bells and whistles that quickly beckoned nurses and respiratory therapists into the room.
In time, however, we learned that what he really needed would not be announced by machines.
Trying to Get Home
Over the last two months, he was in three hospitals: a community hospital, a long-term acute care hospital and, lastly, a university hospital. Each organization had an interdisciplinary team of nurses, physicians, respiratory therapists, physical therapists, dietitians and ancillary staff with the goal of helping him “get better” and “get home” to his family as quickly as possible.
He just wished (his health care workers) would listen to and believe him without him having to “prove” his self-care awareness.
This was also Patrick’s goal. However, because of the rapidly progressing lung disease, he learned that the likelihood he would be healthy enough to go home was approaching zero.
Trying two new immunosuppression drugs was his only hope to stop the illness’ progress. However, the outcome was uncertain and it would take at least three weeks to see if the drugs worked. When Patrick’s breathing became worse and the health care team exhausted all options for his care, he accepted death. And surrendered.
His Dying Wish for Loved Ones and Health Care Providers
Patrick was a very giving person, who had a final request: “Learn from me.”
He wanted everyone involved — from family to health care providers — to know the importance of listening to people with chronic illness about their health management strategies and watching what they did.
For example, as Patrick’s breathing became increasingly worse, his oxygen would be low. He would feel very anxious and experience severe chest pain. Often, providers would come in to check on him and ask how he was doing. They would also carry on a conversation, one he couldn’t participate in until he had breathed enough for his oxygen level to return closer to normal limits. He increased his oxygen level by not talking, closing his eyes and breathing using both an oxygen mask and a cannula (an oxygen-delivering tube that rests in the nostrils).
Using both a mask and cannula wasn’t typical; however, it worked for him.
He also managed his breathing by moving in certain ways and taking breaks, sometime halfway through an activity, such as a transfer from the bed to a chair. This procedure wasn’t “typical” or by the book, but it worked for him.
The Same Lessons, Over and Over
The staff would insist that they had to do procedures by protocol. But after seeing Patrick have problems when it was done that way, they would then listen and watch. When the transfer done “his way” was then successful and safe, they would then agree to do it “his way.”
What was exhausting and frustrating for Patrick was that he had to convince care provider after care provider of the same strategy, rather than seeing the procedure get passed on to the next care person.
Convincing was often by example. That is, he had to do it their way, suffer with shortness of breath and pain, become anxious — and sometimes angry. Then, they would listen to him. The nurses never complained about his frustration or anger. They said that was to be expected because patients are ill. Patrick, however, felt bad. He just wished they would listen to, and believe, him without him having to “prove” his self-care awareness.
Of course, the nurses put the care strategies in his electronic medical record and we wrote it on paper to read when one of us wasn’t at his bedside. However, nothing seemed to work, for two reasons.
First, it was infrequent that the same nurse took care of Patrick for any period of time.
Second, while the nurses and doctors truly did care, Patrick was typically first seen through the eyes of the technology that he was hooked up to. It was as if the bells and whistles were trusted more than him.
Wanting to Remain Positive
One of the most challenging situations for Patrick was during the second week of his immunosuppression drug treatment. Despite his breathing becoming worse, he knew he still had another week for the drug to stop this ravaging attack on his lungs. He told the doctor this.
However, at each visit, the doctor would tell him to prepare for the end of his life. Patrick kept telling the doctor that he wanted to stay positive and focus on the drugs working and healing.
Finally, a nurse helped Patrick tell the doctor that he was not afraid of death and that he had all of his end-of-life decisions made. Yet he didn’t want to talk about death. Rather, he wanted to stay positive about the immunosuppression drugs and focus on healing. That was finally heard by the doctor.
Trust in the Patient
It is important for family members and providers to better understand not only health, but also chronic health care. This means incorporating not only the best health care evidence, but also giving equal credence to knowledge and skills that the patient brings to the health care setting. Health care providers and family members have to not only listen, but to trust what the person with the chronic illness has to say.
The health care paradigm must change.
In the last century, much of health care was acute care, and hospitals and providers were perceived as the experts. Patients were expected to let go and let the providers manage their acute care needs. As a gerontological nurse I understand and support the importance for providers to use the best evidence in care of our patients. However, with chronic health care, the patient is often the expert in some of the specifics of how to manage his or her self-care.
This is important because the percentage of the population of older adults is rapidly growing. By 2030, it is estimated, one out of five persons will be 65 and older. The majority of older adults are healthy not because they are illness-free, but because they have learned to manage chronic health challenges; knowledge accrued from many decades of living.
Person-Centered Care Is an Uphill Battle
Despite the need for person-centered care, health care continues to focus on a provider model, where practice is usually around what works best for the provider.
My brother died with loving family around him, his wife, daughters, son-in-law, sisters and brother-in-law, and his nurse. He died with dignity and with a message.
For him, dying with dignity meant listening and communicating his wishes to all his providers, trusting his care strategies and keeping him involved in his own care as much as possible.
This included a wish for all of us to not be afraid to talk about life or death. He wanted us to remember that just as breathing is a normal part of life, so too is the last breath of death.
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