My wife Uzma died peacefully at home. She hadn’t taken any painkillers for three 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, for the last five years, 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.
Uzma chose her palliative care physician long before hospice. While Palliative Medicine physicians are affiliated with hospice, they try to improve the quality of life of patients even before the patient ever needs 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 metastases. As Uzma wrote previously, the prognosis of metastatic breast cancer is three years average. Hospice merely ensured a comfortable dignified dying process.
Every single hospice appointment was at home. The nurses who came 2-3 times a week. The doctor who came every couple of weeks. The physical therapist, the social worker, and the chaplain, all came home. They met 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 wouldn’t have had to leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put in a catheter in the belly, a tube through which the 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 from 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 ambulate in a manner that was safe and mechanically efficient, i.e., less tiring for her. As I said, no unnecessary interventions.
Had Uzma needed hospitalization for any reason — say, a condition unrelated to cancer that she would survive with treatment in the hospital — she would have bypassed the emergency room and would have been admitted to a bed reserved for hospice patients. Had I needed respite from caregiving, Uzma could be admitted to a hospice bed at a nursing home for up to five days. And the hospice staff would coordinate and arrange everything. We never had to use these options, but just knowing they were there gave comfort and peace of mind.
Two of the most emotionally essential 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.
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 homes 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 daughters’ bus stop. And watch her board and exit her bus from where 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 all suffering. It didn’t stop the pain. But what it did for us was priceless. Without hospice, Uzma would not have died at peace, at home, without pain, and surrounded by family. She would not have died in the room where she wanted to die — our living room.
[If you liked this post, you might also like its companion post How A Doctor Chose Her Last Doctor. Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About 3 months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 178 reviews, all 5-star, on Amazon. This blog is now maintained by the author of this article, Dheeraj Raina.]
I think hospice workers are truly angels. We kept my father home and they came whenever my mom needed them. It was so much better than having him in the hospital.
Wow, that is incredible. Thank you for sharing.
Philomene Pean, Hospice Chaplain
Hospice helped to facilitate what appears to be a seamless transition. That’s not to say it wasn’t devastating. There is something to be said for dying with dignity. Your comments sums it up well: “Hospice merely ensured a comfortable dignified dying process.” This is an assurance that all patients should be entitled to.
Hi my dear Wendy, Hospice is a life saver at a time when we must go meet our maker. They make the transition tolerable for the patient, family and friends. They are G-D’S special angels who accompany us to the end of time. They go on and provide dignity for others and understand their personal needs as well, they go on and on. G-D Bless them with the dignity and courage they provide for others ❤
I am proud to be a volunteer at my local hospice in Port St Lucie County. Exceptional care from everybody.
Dheeraj so well written and educative.
Your post brings back so many memories. And I am so sorry for your loss. I followed Uzma for a while – A wonderful, wonderful voice in all of this. And such a loss.
My mom died in 1991 of MBC and all she wanted was to die at home. So, we were able to bring her home….the hospital bed in the living room, looking at the trees. We had hospice nurses visit several times a week, they were accessible 24/7 via phone. The pharmacy delivered whatever we needed, and my sister and I learned to flush the port, give simple injections. We could just stay home with our mother, and be with her at the end. Three short weeks. Brain mets meant a loss of lucidity, but we stayed awake with her, taking every opportunity to communicate where we could. It was a privilege, in a way…..but i’ll never say cancer is a gift. Still, I am forever greatful to hospice for helping us.
Thank you for continuing Uzma’s story. All the best to you and your family.
Thank you for sharing your hospice experience.
My mom died peacefully at home with her loved ones and hospice on Dec 14, 2018. My mom did not have cancer but when I exhausted all avenues of treatment we got hospice which was 2-3 weeks before she went to heaven. I agree that hospice is invaluable for comfort care.
Sincerest condolences on your mom passing away.
Thank you first for your beautiful narration of Uzma’s journey at the end. It’s very consoling to know Uzma lived her time with the dignity and in the manner she requested. Second I take this opportunity to thank the hospice team for the selfless work they do to relieve the pain and suffering of a family member and at the same time preparing and supporting the others members.
I agree. The work of a the hospice team is to be commended.
My heartfelt condolences to you and your family. Uzma was a very brave and graceful lady/physician. Have read her book. After reading this article I am so much enlightened with knowledge. She had lived an exemplary life and has thrown so much light on lack of mental health services at times in the need of the situation. Hospice care appeared to have done so well. I am so deeply touched by all this and being a physician myself have learnt another aspect of dealing with my patients and life. Her journey was tough but she left behind legacy of knowledge and compassion in medicine field. Would always remember her and would pray for her and her children ‘s peace.
I am so sorry for this loss of such a Brave Mom & Wife & Friend & SO Much more!
THANK – YOU for sharing Just how Beautiful it can be when Hospice is involved.
Thank you for sharing such an important moment in your family life.
Thank you, I’ve always wanted hospice to relieve my family. I will make sure, once again to make them aware of my wishes.
It is the way to go, for sure.
Hospice was the answer to our prayers for both of our parents. These wonderful hospice angels provided comfort and care not only for our parents but our family. They kept us notified of any and all changes, what would help them, what we could do to aid and support our parents all with professionalism, grace, and respect to all! I will always be grateful! Thank you hospice!
Completely agree. They are angels.
I had the honor of serving hospice patients in my nursing home for many years. As a nurse, I believe it in every way. I also tell people when they are told about hospice that it’s main purpose is to provide comfort and care to the patient and family
In itself, hospice is not a death sentence, but a way to live what life you have left the way you would want to, in comfort and with dignity. .
Thank you for being and angel of life!
What a beautiful, beautiful tribute – to the amazing benefits of hospice care; to Uzma; to the author. Dying, while painful to those left “behind,” can be such a transformative event for all if well-supported. Here’s to the heroic providers of hospice care whose work helps us embrace the inevitability, and even the beauty and transcendence, of death as another step in the path of life.
My husband passed away in May 2017, hospice was awful, my mom passed in November 2018, different hospice just as bad. Had a third hospice came in to take care of my mom, they were fantastic.
I hope what happened with my loved ones never happens to anyone else. Losing a LOVED ONE is very traumatic and I’m still numb. When you have two different hospices that don’t care and your loved one is in pain it makes the process all that more difficult.
I am sorry to hear that your had such a terrible experience with hospice. Equally sorry for the losses so close to each other. May their memories help you in your grief.
I have worked as a hospice aide for 7 years now. I truly believe in the power of hospice, I say power because when I lost my son the 11 of January this year I had the power of the best hospice team to back me with taking care of my son. In the past I used hospice for my mother and half brother when they needed end of life care. From my view having hospice in to help care for life limited illness makes the unbearable part a little more bearable. I am so sorry for your loss. You told the story of your Mom beautifully
Thank you for sharing your experience with hospice and so sorry for your loss.
When my husband became so frail from COPD and Alzheimer’s that the doctor referred him for hospice, I was almost giddy because I no longer had to make all his health care decisions alone. Our sharing of his care with a competent, compassionate team gave him a safe and comfortable final year in his own beloved home with attention from family, friends, pets, and the hospice team who became part of our loving circle. I have only respect and gratitude for the support they gave us as they guided us gracefully into the inevitable.
Helen, thank you for sharing your story of hospice. I am sorry for your loss and hope that good memories help you in your grief.
Thank you SO much for sharing this amazing journey. As a hospice nurse, it made me proud. It made me cry. I am TRULY sorry for your loss, although I know that “sorry” does not help heal those wounds. So many assume that “hospice kills” when it is the unrelenting disease processes. I am so thankful that hospice and her wonderful team was able to make her journey and yours a “little” better. I’ve always found that the more education the patients and families have, although it is very difficult for us to give sometimes as we are human with real emotions and we definitely get attached to patients and their families, the education may help them “cope” just a little better. I know there is NO way to be fully prepared. Thank you again for sharing this.
Ally, thank you for doing what you do. I can see you are so compassionate. Your patients are lucky.
So true. Hospice is good. Most think when one is on hospice it is death but it is not. Hospice is caring for the patient in a respectful way. My mom died of cancer in 2008 hospice was not called in early and she suffered due to the stigma that hospice =death. My dad is on hospice care and has benn for a year now. He has COPD and hospice sees him 3 times a week and he’s breathing easier. I believe in hospice.
I have worked for hospice for over 5 years now, as an aide, and I will finish nursing school in 3 months and plan to continue with hospice. I feel this is my calling. After 15 years of teaching school, I love the children but I know working with hospice patients and their families is priceless. Yes I took a drastic pay cut, but the experience and love I share with patients and their families is an unbreakable bond. I have held the hand of patients and prayed with them and just been there for them so they didn’t die alone for those with no family. It’s not for everyone, and that’s OK, but for me, If I can bring comfort, love and care to a patient, and their families it’s very rewarding. Alot of times the family is better able to cope with the situation if they understand what is happening with their loved one in the process of dying.
Ruby, thank you for sharing your story. I’m glad you found your calling. Many patients will be lucky that it’s hospice. I can hear the compassion in your voice.
My mother died at home from gastric cancer, and she had hospice. Our hospice nurse was an angel on earth. I could not love her more. I am truly thankful that my mom was able to die at home, as she wished. But sometimes, I think articles like this do a disservice, by sharing one story of a peaceful death. I really expected that to happen with hospice. Unfortunately, that was not the case for my mother. She suffered a great deal of pain for several days until her death, despite the medications we gave. She suffered terminal agitation, again needing to be medicated. I stayed up around the clock, giving Mom medication every hour, and she was unconscious for the last several days. I felt helpless and guilty when I could not stay ahead of her pain. Hospice would add additional meds, but ultimately, it was my responsibility to medicate her, clean her, care for her. It was very, very difficult and not a peaceful death. For months afterward, I would think of my mother’s last days and become sick to my stomach. In contrast, my dad died of cancer in the hospital. The nurses were able to keep him comfortable because they could immediately give him additional medications. They were able to do his personal care. I could just be with him because it wasn’t my responsibility to manage his pain and care. With the pain management at the hospital, he was able to die very peacefully. I am not trying to criticize hospice – I could never have survived my mother’s illness without them. I just think it is really important for people to know that death can be messy, slow, and painful, and having a loved one die at home may not always be the best choice – it is not always the peaceful end that we expect it to be.
Thank you for your note, Trudy. So sorry for your losses. I agree that while hospice may allow a person to die at home, it does not completely alleviate the caregiver’s burden. That burden is something that is often overwhelming and all consuming.
Hospice is amazing. Thanks so much for they’re labors. If I would be honored to die in such comfort I would rejoice. Thanks for what you do.
Never again. My niece died a horrific death. Her hospice nurse was not present even knowing that she would most likely pass that day! She was in terrible pain (cancer) and my sister was unable to contact anyone from the agency. Hopice is NOT always the way to go, sorry.
I am sorry that your family had a terrible experience. I wish everyone would have access to the kind of hospice my beloved Uzma did.
I’m sitting next to my 92 year old father as I write. Had to give morphine twice today. No more swallowing. Garbled words. A mighty oak is falling
Wishing you the fortitude and strength to live through this difficult time. Wishing your father whatever he wished for this time to be.
I’m sorry for your loss and glad Uzma passed how she wanted to.
We had a great hospice team when my grandmother passed. Their value is inestimable.
It’s good to know more about hospice care. I love how you said that there’s no unnecessary interventions or things. That sort of care would be great for my mom, who’s in stage three kidney failure.
I have read one or two comments about hospice not being what people at hoped it would be. But most of what I’ve read in rapid to this article was positive. I will say this – once my Uzma began hospice, life became significantly less hectic than it had been for over the 6 months prior to that.
Thank you for your kind words, as a Hospice nurse this is the experience we hope to give. It is an honor and privilege to come into your home and give you and your loved ones the support and love you need at such a time. I am sorry you lost your beautiful wife.
Thank you for your kind words. And much gratitude to your profession.
Thank you for the honest and informative post. I face a similar prognosis and hospice is something I would like to know more about but at the moment I find too frightening to ask.
I DID WORK IN HOSPICE CARE FOR A COUPLE OF YEARS…!
Reblogged this on By the Mighty Mumford and commented:
HOSPICE IS A GREAT IDEA—A GOOD DEATH!