The Hospice Way To A Good Death

Uzma died peacefully at home. She didn’t take any painkillers for her last 3 days. Our kids, my parents and I were next to her. In the weeks leading up to her death she was visited by many old friends. Many new friends, whom she had never met, sent her flowers, cards, food. It was a good death. Yes, over the course of the last 5 years the cancer and its treatment took a physical and emotional toll. Yes, she left us a lot earlier than she deserved to go. Yes, the kids are young. Nevertheless, it was a good death. There are few among us who wouldn’t want her end — pain-free, at home, with loved ones near. None of it would have been possible without hospice.

When Uzma was referred to hospice, I knew what hospice meant — that now the focus would be on comfort care. But I didn’t quite understand then the incredible, warm, enveloping embrace it provides to the dying and their family. A referral to hospice is not a death sentence. The death sentence was the diagnosis of the liver mets. As Uzma wrote previously, the prognosis of metastatic breast cancer is 3 years average. Hospice merely ensured a comfortable, dignified dying process.

Every single hospice appointment was at home. The nurses that came 2-3 times a week. The doctor who came every couple of weeks. The physical therapist, the social worker and the chaplain, came home. They met with Uzma in whichever room she was at the time. Though they had their professional tasks to complete, they met with Uzma for only as long as she wanted to.

But for going to the hospital for paracentesis — the procedure of draining the fluid that accumulates in one’s belly when the liver gives out — Uzma didn’t leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put in a catheter, a tube, in her belly through which we could drain the fluid at home. The hospice nurses showed me how to drain the fluid once a day, if necessary, to keep Uzma comfortable by keeping her belly from distending.

There were no unnecessary interventions. No lab tests whose results wouldn’t change treatment. No medications that wouldn’t provide comfort. One of the first things we received form hospice was a comfort medication kit to use to alleviate symptoms that can accompany dying. They included drugs to help with agitation, anxiety, pain and respiratory secretions. No running to the pharmacy for medications either; they were all delivered to home. The physical therapist who came home said his goal was to ensure safety and comfort. So he taught me how to help my wife get out in and out of bed, use the bathroom, sit around and move about in a manner that was safe and mechanically efficient, i.e. less tiring for her. As I said, no unnecessary interventions.

Two of the most emotionally important services that hospice provided was a chaplain and a social worker specializing in counseling children about death and dying. The visits with the chaplain were among the longest Uzma had with any of the hospice professionals. The social worker provided some excellent tips about helping kids. Both the chaplain and the social worker provided incredible emotional support to Uzma and us. The social worker, who specializes in counseling kids, is also available to provide bereavement counseling for several months after Uzma’s death.

Then there’s the equipment that hospice provides. We already had a cane, a walker and a wheelchair. But if we didn’t have those, hospice would have provided one or all of those. Eventually, hospice provided a commode so Uzma could go without having to go to the bathroom. But the most important and most used thing that hospice provided was a hospital bed.

Uzma had decided long ago that when the time came for the hospital bed, it would go next to a large window in the living room that faces the front of the house. From our bedroom window one can only see the back of other houses in our neighborhood and they alleys separating them. In the front, there are trees. She could see people as they parked their cars and walked up to the house to visit her. Most importantly, she could see our daughter’s bus stop. She could watch her board and exit her bus from the hospital bed. That’s the main reason she had chosen that location for the hospital bed long before the bed came. The second most important reason was that she did not want to die in a bedroom, where people go to sleep. She wanted to die in a living room, where people live and meet.

Hospice was available 24/7 to consult about any difficulties Uzma was having. Those phone calls were always reassuring. When she died on the coldest night on record in Chicagoland, the hospice nurse came within an hour to examine and pronounce her dead. He also called the funeral home to notify them of the death. He gave us a heads up about our next steps that night with the funeral home.

Hospice didn’t stop suffering. But what it did for us was priceless. Without hospice, Uzma would not have died in a manner of her choosing at home, without pain in her last few days and surrounded by family. She would not have died where she wanted to die — in the living room.

 

 

Take A Chance On Love

If we were to choose a Christian patron saint for ourselves, Uzma and I would probably choose Saint Patrick, the “Apostle of Ireland” and not Saint Valentine. After all, it was on a celebration of St. Patrick’s day 21 years ago that we both took our chance on love. I asked her out. She accepted, despite the fact that I was wearing a hideous green shirt that day and I had not made a good first impression a few months ago.

It was the beginning of an improbable love story. It wasn’t just that she was Muslim and I am Hindu. It was that she was born in Pakistan and I in India. It wasn’t just that she was born in Pakistan. She was born of parents who had migrated to Pakistan when the country was born and had witnessed, first hand, the horrors of partition. They had been persecuted by Hindus and Sikhs on their journey out. It wasn’t just that I was born in India. I belonged to the Kashmiri Pandit community that was ethnically cleansed out of its homeland by Pakistan-supported Muslim extremists.

Yet, in Chicago, where we met, we learned to see ourselves and each other as not just vessels carrying that history, but as individuals with our own independent identities. Influenced by our ancestry, but not beholden to it. Our separate stories made us stronger as a couple, even if our couple-hood was hard for some to accept.

Against many odds, we nurtured our love day after day, week after week, month after months and year after year. Romeo and Juliet has nothing on us. Romeo and Juliet is not a love story. It’s a crush story. The narrative pace of that play belies the fact that Romeo saw and fell in love with Juliet on a Sunday evening and they were dead by the following Thursday — a mere 4 days later.

In both our countries of origin, there are extremists —primarily of the religious and cultural type, who hate Valentine’s Day. They think it is a corrupting western influence. They seem ignorant of the fact that every culture and subculture has its own poignant love story folk tale. How can saying yes to love be bad?

Though we owe more to St. Patrick, I say, “Folks, take a chance on love this Valentine’s Day and every day of the year.”

Is it easy? No.

Is it worth it? Absolutely!

And try not to be like Romeo and Juliet.

The Kindle Edition Of The Book Is Here!

Letting all readers know that Uzma’s book is now available worldwide as a Kindle edition (ebook version of Amazon).

We can all read on the Kindle device and in the Kindle app of any smartphone.

And those who have purchased the paperback (that is, it was not a gift), can get the Kindle edition for 2.99 USD or comparable price on their local Amazon site.

How A Doctor Chose Her Last Doctor

About one and a half years before she died, Uzma started looking for an appointment with a palliative care physician close to home. She called a few different palliative care physicians’ offices. The conversations would always go the same way.

“Hi this is Uzma Yunus. I have stage 4 breast cancer. I want to make an appointment with Dr. ABC.”

“Have you been referred to hospice?”

“No, but I know that eventually that’s coming my way.”

“Mmm…I am not sure how to do this. Leave your information with us. We will call you back after speaking to the doctor.”

Uzma was an optimist. She continued cancer treatments almost an year longer than a part of her really wanted to because she thought, “There is a chance that the next treatment regimen might click for me. If that happens, my kids will have me around longer.”Uzma was also a realist like none other. She always tried and hoped for the best but knew, based on her review of the literature regarding stage 4 breast cancer, that she was unlikely to make it past this year.

It is really hard to be an optimist and a realist at the same time. It is even harder to be both and be one who plans ahead. Uzma had changed her cancer care from a nearby cancer center to Northwestern when her local oncologist had made treatment recommendations that were inconsistent with treatment guidelines. On most days, however, Northwestern was an hour drive away each way. She knew that ultimately she would need palliative care/hospice and decided she wanted her palliative care team to be local, not based an hour away.

So she started calling the local docs. The conversations always went the same way as above. No one ever called back. Then she got hold of her internist and asked her help in getting an appointment with a palliative care physician. This finally got her the appointment she was seeking.

The palliative care physician was surprised that she was seeing him while still in active treatment. Uzma saw this doctor 4-5 times in his office. When she was eventually referred to hospice by her Northwestern oncologist, she proudly said, “I already have a palliative care physician. I want to be referred to the hospice for which he works.”

When she began hospice it gave her comfort to already know the physician and I’m sure it helped the doctor to already know his patient.

[Watch this space for more on the hospice experience — something Uzma would have shared with her readers]

Uzma Did Not “Lose” Her Battle With Cancer

The tributes and the reminiscences have continued to pour in since Uzma breathed her last over a week ago. I have also seen some people write about her on their own social media pages. All of them speak of Uzma in glowing terms. However, some of them say, “Uzma lost her battle with cancer” or something along those lines.

Uzma would have hated, and I hate that description.

Uzma would have said — It is unfair to cancer patients and their families to describe the outcome of their cancer journey as winning or losing. The disease can be such that one can survive and thrive for years after only one bout of treatment. Or it can be relentless and overwhelming, and fail to respond to treatment after treatment. The only choice those with cancer have is whether to embrace their illness, connect with others and live their life fully irrespective of its length. That’s it.

As she says in her book, “That’s how you rock it (cancer). You talk to others, you connect with survivors, and you keep your head high. You make friends with fear. You learn that uncertainty is cancer’s middle name. You stay grateful even in the darkest days. You dress up for chemo. You sport fashionable headgear. You fall and get up again and again and again.”

Uzma did not lose her battle with cancer. Her cancer died with her. But while they were both alive, it was a no contest. Uzma had her cancer beat every single day that she was alive.

Final Farewell

Uzma was laid to rest on February 3, 2019 in ceremony attended by close and extended family, old friends, new friends, former coworkers and many people who had never met Uzma but only knew her through her writing. Everyone who loved Uzma, everyone who attended the services, and especially everyone who gave a eulogy made her final services serene and beautiful. Thank you.

Uzma was laid to rest following Muslim tradition because she was born a Muslim. However, she in her life and death she transcended all divides, whether of faith, creed or national origin.

The following text is from the concluding paragraphs of my prepared remarks for her eulogy:

“My Uzma wrote and through her writing touched many lives around the world. Her blog has been read by 300,000 readers in 170 countries. What draws people to her blog and now to her book is not just her simple, unpretentious way with words, but also the way the writing conveys her acceptance of uncertainty and fearlessness in the face of the death. When her cancer recurred and became stage 4, she knew that it would take her. She started to take more of life in, love more deeply, play with more abandon and give of herself more freely. When people reached out to her after reading her blog, she took time to speak to them and sometimes counsel and coach them as a friend. I knew this, but I didn’t know the extent of it until she died and people from around the country and around the world started messaging me saying how she had helped them through 1:1 interaction. And that tells me that she is no longer just mine. Through her writing my Uzma became your Uzma, our Uzma, the world’s Uzma.

David Eagleman, in the book Sum: Forty Tales from the Afterlives says, “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.” Uzma died 4 days ago. Today we consign her to her second death and mourn again. But I am confident that through her writing and by becoming the world’s Uzma, the third death will be a long time coming, perhaps even after most of us gathered here today are long gone. Therefore, I say, let’s continue to celebrate our Uzma after we have mourned her today.”

In Memoriam

Uzma Yunus, MD, the creator of this blog and my beloved wife of 17 years, breathed her last on Wednesday, January 30, 2019. She was laid to rest on February 3, 2019 at Memorial Park Cemetery following a wake and memorial service made beautiful by the love of friends, family members and many fans of her writing who attended.

Uzma wanted this blog to continue and had added me, her husband, Dheeraj Raina, MD as an admin/author. It will take some time to figure out how this blog will be continued. In the meantime, please order, read, review and recommend her book Left Boob Gone Rogue, published a couple of months ago and available on Amazon.

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