Tag: End of Life Care

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Understanding Hospice Home Care

— A Complete Guide

Navigating the later phases of a loved one’s life may be an extremely emotional and difficult experience. During these difficult times, hospice home care arises as a source of comfort and support, providing a compassionate alternative to typical hospital medical treatment. This specialist care focuses on improving the quality of life for those in the final stages of a terminal illness by giving them the dignity, respect, and peace they deserve at home.

The Essentials of Hospice Home Care

Hospice home care exemplifies a compassionate approach to end-of-life care, providing a beacon of comfort and dignity to those in their final stages of life. Unlike traditional medical treatments geared at curing diseases, hospice care focuses on quality of life, providing comfort and support to both patients and their families. This comprehensive care paradigm is holistic, addressing patients’ psychological, social, and spiritual needs as well as the physical symptoms of their sickness.

At the heart of hospice home care is the dedication to respecting a patient’s choices, allowing them to spend their final days surrounded by loved ones in the familiar comfort of their own home. Pain treatment is an important part of this therapeutic method. Expertly trained healthcare experts work diligently to manage symptoms and reduce discomfort, allowing patients to live as fully and comfortably as possible.

Beyond physical care, hospice home care offers emotional and psychological assistance. Hospice staff provide counseling and grief assistance because they understand that patients and their families are going through one of the most difficult times of their lives. This guarantees that families are not alone in their journey, giving them a shoulder to lean on both during and after the patient’s life.

Spiritual care is also an important component of hospice home care, allowing patients and their families to examine life’s core concerns, make peace with unresolved issues, and, if applicable, strengthen their spiritual connections. This component of treatment is tailored to the individual’s beliefs and desires, with the goal of providing peace and meaning to patients and their loved ones during this momentous life experience.

Hospice care teams are multidisciplinary, made up of doctors, nurses, social workers, chaplains, therapists, and trained volunteers. Each member contributes their knowledge to build a support network that surrounds the patient and their family with care, love, and understanding. This multidisciplinary approach assures that every imaginable need—whether physical, emotional, or spiritual—is met.

In essence, hospice home care represents a paradigm shift in how we see the end of life. It is about appreciating the importance of every minute and allowing patients to spend time with loved ones, reflect on their life, and transition quietly. Hospice home care helps to reimagine the final chapter of life as one of love, respect, and compassion, rather than despair.

Who Can Benefit from Hospice Home Care?

Hospice care is designed for patients who are facing the end stages of a terminal illness, with a life expectancy of six months or less if the disease follows its usual course. However, it’s not just for the patients; hospice care also significantly benefits the families and caregivers by providing them with educational resources, emotional support, and respite care, helping them navigate through their grief and the caregiving process.

The Core Services Offered

The hospice care team typically includes doctors, nurses, social workers, spiritual advisors, counselors, and trained volunteers. They work together to tailor a care plan that meets the individual needs of each patient and family, which can include:

  • Pain and symptom management: Focusing on alleviating symptoms and ensuring the patient’s comfort.
  • Emotional and psychological support: Addressing the emotional, psychological, and spiritual needs of patients and their families.
  • Companionship and daily care assistance: Helping with daily activities and providing companionship to reduce feelings of isolation and anxiety.
  • Bereavement support: Offering grief counseling and support groups for families before and after their loved one’s passing.

How to Choose a Hospice Home Care Provider

Selecting the right hospice care provider is crucial. It involves considering factors such as the provider’s reputation, the quality of care, the availability of services, and the level of communication and support offered to families. It’s important to meet with several providers, ask questions, and choose one that aligns with the patient’s needs and family values.

The Impact of Hospice Home Care

The importance of hospice home care to patients and their families cannot be emphasized. This approach to end-of-life care has a significant impact on the quality of patients’ final days because it allows them to remain in the familiar and pleasant environment of their own homes. The environment has a significant impact on a person’s well-being, particularly throughout the final stages of life. Being at home rather than in a hospital allows patients to be surrounded by personal memories, things, and the people they care about, which can considerably reduce the emotional load of facing a terminal illness.

Hospice services provide patients with specialized care that addresses their physical, emotional, and spiritual needs. Pain and symptom control are prioritized to allow patients to interact with their relatives and enjoy their remaining time as comfortably as possible. This level of care empowers patients by offering them a sense of control over their lives and the dignity to choose their own treatment and how they want to spend their final days.

Navigating End-of-Life Care with Compassion and Dignity

Families benefit greatly from the extensive support that hospice home care offers. Going through a loved one’s end-of-life process can be emotionally and physically draining. Hospice care teams do more than just attend to the patient; they also assist families with counseling, respite care, and information about what to expect. This assistance is crucial in guiding families through the complexity of sorrow, loss, and the practical aspects of caring. It also allows the family to focus on being present with their loved one rather than being distracted by caregiving or decision-making.

Hospice home care provides significant support to families, which benefits them greatly. Going through a loved one’s end-of-life care can be both emotionally and physically taxing. Hospice care teams do more than just look after the patient; they also provide families with counseling, respite care, and information on what to expect. This help is critical in guiding families through the complexities of grief, loss, and the practical responsibilities of caregiving. It also enables the family to concentrate on being with their loved one rather than being distracted by caregiving or decision-making.

 Component of hospice care cannot be overlooked. Families often find themselves in uncharted territory when a loved one enters hospice care. The hospice team’s role in educating families about what to expect, how to manage symptoms, and how to cope with grief is an essential service that can demystify the dying process and alleviate fears.

In essence, hospice home care profoundly impacts both patients and their families by providing a holistic approach to end-of-life care. It ensures that patients can live their final days with dignity and comfort, surrounded by love, while offering families the support, education, and guidance needed to navigate this challenging journey with grace. This model of care not only addresses the physical symptoms of the patient but also nurtures the emotional and spiritual well-being of everyone involved, making the inevitable transition a shared, supported, and deeply human experience.

Hospice home care displays the power of compassion and dignity in the face of life’s most challenging challenges. Hospice care focuses on comfort and quality of life, guiding patients and families through the end-of-life process with dignity and support. If you or a loved one are considering hospice care, remember that it is a decision that prioritizes love, dignity, and comfort during the most difficult times.

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My advice for terminally ill Latinos like me

— You have options

By Jose Alejandro Lemuz

I am dying from prostate cancer that has spread to my bones.

But it’s comforting to know that I will likely soon die gently because I plan to use a medical aid-in-dying law championed by civil rights icon Dolores Huerta.

Thanks to the California End of Life Option Act, I will soon have the option to take a medication prescribed by my doctor that will allow me to die peacefully.

While I understand why my doctor wanted me to undergo more treatments, at this point in the rapid progression of the disease, the costs outweigh the benefits for me. Doctors should consult with patients about their care, not dictate it. Only I can determine how much suffering I can endure.

Less than three percent of the Californians who used the law in 2022 were Latinos, even though we represent 40% of the state’s population, and polling shows 68% of Hispanic Californians support medical aid in dying.

I suspect this disparity is because we have unequal access to this end-of-life care option because of healthcare system bias, cultural differences, and/or language barriers. I am a low-income body shop mechanic who does not speak English. My family doesn’t even have money for my burial.

Shamefully, I had to learn about this law through YouTube videos of a young Puerto Rican man, the late medical aid-in-dying advocate Miguel Carrasquillo, and TV news stories, instead of through my own doctors.

‘No More Treatment’

In December 2023, three months after trying to start the conversation about medical aid in dying with my healthcare team and after I had already endured numerous rounds of treatment since my diagnosis in 2018, I told my doctor:

“I don’t want any more treatment, I want you to respect my decision and I want you to help me. I’m asking that you declare me at the end stage because you’re the one who knows the treatment isn’t working for me anymore.”

I repeatedly asked my oncologist to estimate how long I have to live.

She declined to give me a prognosis. I showed my doctors a web page about this end-of-life care option to prompt the conversation with them.

They responded, “No, not yet…Keep taking more chemo.”

‘I Have Options’

I kept telling my doctors: “I have options.”

Why did my doctors not advise me about my healthcare options at the end of life, including my right to decline medical treatment for this incurable illness?

Hospice

For five years, I endured treatments to try to cure the cancer so I could work to provide for my two children and enjoy life.

Not anymore.

Last week [March 10], my doctors finally placed me in hospice care that focuses on alleviating some of the pain.

I am tired. I am weak. I have had a fever and convulsions for days. My frail and thin body can no longer withstand more than just a few steps.

Suffering is like being tortured.

Cancer consumes you little by little.

Unfortunately, the hospice care I am getting does not significantly reduce my suffering, so I will soon get the medication that will relieve me of this pain so I can die in peace.

I have spoken to God and asked Him to forgive my sins throughout my life.

I have talked to my children.

They understand and they support my decision.

They know it is my time to go.

Complete Article ↪HERE↩!

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Is extending life by weeks worth the toll some cancer drugs take?

— Doctors push for ‘common-sense oncology’

When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.

People may celebrate a 2-week improvement in survival without acknowledging costs

By Amina Zafar, Christine Birak

Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.

Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.

The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.

“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”

Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.

A man stands with a woman holding an umbrella while on vacation in B.C.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.

Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.

Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.

The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.

Balancing hope and reality

Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.

“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”

Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.

In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.

A woman with long hair, seated wearing a black top and black glasses.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.

Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.

Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.

When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.

“People are saying is this really meaningful?”

Gyawali aims to normalize asking such questions.

Quality of life and quantity

Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.

The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.

The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.

“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”

Now, Koven feels families should ask more questions of doctors, such as:

  • How much time does this treatment offer?
  • What are the real costs and benefits of the treatment?

Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.

A man stands wearing glasses, a striped shirt, suit jacket and conference lanyard in front of a blue backdrop reading American Society of Clinical Oncology.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.

“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”

Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”

Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.

Seek meaningful answers

Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.

“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”

Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.

After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.

“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.

Eisenhauer would like to see cancer clinical trials include more criteria.

“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”

Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.

A patient receives chemotherapy treatment for breast cancer in France.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.

Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.

So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.

Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.

For them, quality of life includes loving glances.

“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”

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Irish committee to recommend laws for assisted dying

— Proposed legislation would allow people help with ending their lives under certain medical conditions

The legislation would require two doctors to sign off on a person’s incurable and life-threatening condition.

By

An all-party parliamentary committee in Ireland is to recommend that legislation be introduced to allow for assisted dying if a person has a terminal illness or has only a short time to live.

A majority on the Oireachtas committee on assisted dying supported the proposal that the law be changed to allow someone to get assistance to end their life if they have between six and 12 months to live.

The legislation would apply to people who have been diagnosed with an illness or a medical condition that is “incurable, irreversible, progressive” and at an advanced stage that will cause death within six months.

It is expected that the time limit for those with a neurodegenerative condition would be extended to 12 months.

The committee’s report is to be published on 20 March but has now been agreed by a majority of representatives from all sides of the Irish parliament. After its publication it will go to government for further consideration.

It is unclear whether the three-party coalition government led by Leo Varadkar is prepared to introduce legislation to enact the recommendation before a general election expected this autumn.

If it does, Ireland will join other countries including Switzerland, Belgium, Canada and the Netherlands in allowing assisted dying under certain circumstances.

It is understood that the proposed Irish legislation would require two doctors to sign off on a person’s incurable and life-threatening condition.

At hearings representatives of the Christian churches and a Muslim cleric voiced their opposition to the legislation, saying it was morally wrong to kill someone and was against God’s will.

Some psychiatrists also argued it could lead to “a slippery slope” with increasing numbers seeking to end their lives.

But the committee’s recommendation has been welcomed by the chair of the advocacy group End of Life Ireland.

Janie Lazar said: “We’ve been working hard to get people talking about assisted dying and about the choices that should be available to those who have no time to wait or waste.”

Constitutional law experts say they are confident that the committee’s recommendation would not require a referendum but a simple law change.

Nathan Stilwell, assisted dying campaigner for Humanists UK, welcomed the “bold move”, comparing it favourably with the debate in Britain where a report by MPs last month did not recommend a vote on the issue.

“Well done to the Irish special Oireachtas committee on assisted dying for taking an evidence-based and compassionate approach. It’s brilliant to see such a bold move after just a week ago a Westminster committee did not vote for any change in the law,” said Stilwell.

Complete Article ↪HERE↩!

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Death doulas

— Helping people at the end of their life

By

You may have heard of a birth doula – someone who provides non-medical support and advocacy throughout pregnancy, birth and after the baby has been born. More recently, so-called death doulas – people who assist at the other end of the lifespan – have been growing in popularity.

The role of death doulas is still relatively new, so the terminology and definitions of what they are based on what they do are in flux. They are sometimes referred to as an end-of-life doula, soul midwife, death coach, dying guide, death midwife and palliative care doula. The actual term used is often down to the preference of the practitioner and how they define their work, as well as cultural norms within the country they work in.

Death doulas are known to work in Brazil, Canada, the Czech Republic, Germany, Ireland, Italy, Japan, New Zealand, Russia, the UK and the US. They tend to provide support to people with life-limiting or terminal illnesses, focusing on improving both the quality of life and the quality of death someone experiences. This can include helping with funeral plans, talking about the processes involved around death, or helping someone with their care appointments.

Sometimes, the doula’s contribution is simply about being next to the person and providing company.

The work of a death doula can extend beyond the dying person. They can provide emotional and social support to family, friends and even neighbours – typically the informal carers and social network surrounding the dying person.

Doulas help those close to the dying person with the impending loss (so-called anticipatory grief). Some also carry out errands and chores to enable them to spend time with the dying person. They may also continue to visit those people after the death to support them as they grieve. Crucially, death doulas can enhance the links between professionals and the social support around a person by helping with communications and advocacy work.

Filling the gap

With healthcare systems and informal carers typically stretched beyond capacity, death doulas can provide a means to fill the gap and provide personalised attention. Someone can access doula support either privately or, depending on the doula, through voluntary means.

My colleagues and I recently examined how end-of-life doulas can be provided by the NHS. It noted that the flexibility of the services doulas can provide was not only helpful for the dying person but also for the wider healthcare system. It helped people who may otherwise not receive support due to service gaps, strict referral criteria, or lack of social support.

Beyond supporting individuals, some death doulas see community engagement as core to their role. They are keen to share information about the dying process and grief with others. They may host workshops or death cafes. Across this work, their contributions are to normalise talking about death, dying and loss in society.

Anyone can become a death doula, and it is not currently a regulated profession. There is a wide range of doula training available internationally, including online, provided either by individual doulas or by organisations such as Living Well Dying Well.

People at a death cafe
Death cafes give people the space to talk about the ultimate taboo.

Personal experience

In addition to their doula training, doulas bring their own professional and personal experience to the role. International research on death doulas has noted that many who have become death doulas have a background in professional healthcare, social care or education, and may already have some experience with death.

Those who have trained to be a death doula can be eligible to join a community of practice. Within the UK, End of Life Doula UK is a membership organisation for doulas, setting standards for doula practice and representing doulas. Similar organisations exist globally, including the International End of Life Doula Association.

Death doulas are not a replacement for specialist palliative care and cannot prescribe drugs. Their role is to support people in having a good death.

The growing demand for death doulas is one example of how society is questioning what a good death can be and how to make it happen. Other examples include discussions about assisted dying and improving death literacy. Rather than consider death a societal taboo, there is a growing recognition that people want to value the end of life and reshape how it is experienced.

Death doulas can play a pivotal role in supporting a dying person and those around them. Their support can be emotional and practical, often bridging the gaps in existing support or helping to signpost to relevant services. Not everyone may want a doula, but those who do may see it as someone who can guide them through a significant life process.

Complete Article ↪HERE↩!

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“I’m not afraid of dying…

But I’m not ready to give in yet”

Lisa Brassington spoke with us in October as she was receiving support from Marie Curie Hospice, Bradford. Here she talks about how the kindness of Marie Curie staff made all the difference to her wellbeing.

By Lisa Brassington

I was diagnosed with a brain tumour in 2011. I’ve had years of radiotherapy and chemotherapy, but I’m on the very last chemo now. After that, there are no more treatment options. The tumour has started to spread to my temporal lobe, so it’s affecting different areas of my body and I’m paralysed down one side. I now need a lot of support.

I used to go to the gym three times a week and I loved food and cooking. I love reading and history. I fostered and rescued Bassett hounds. I had a Bassett hound called Ralph who I walked daily, but I had to give him up. A fantastic rescue charity found him a beautiful home and they keep me updated on his progress. I’ll never be able to have another dog. That breaks my heart.

Before coming to Marie Curie Hospice, Bradford, I’d been stuck in my bedroom at home for over eight months. My husband and I had been looking for care that whole time and couldn’t find anywhere that could support my needs. I felt so unsafe and frightened. Eventually, we found the hospice, and now I feel so safe, cared for, and even loved.

Nothing better than a hug

The Marie Curie Hospice in Bradford is fantastic and it had such an impact on my outlook. It’s not just the unbelievable care they give, it’s their kindness as well. I’ve never experienced kindness like it here, and I’ll never forget that. The staff are always smiling, and I get hugs and lots of care and attention. There’s nothing more important to me than a hug.

Before I arrived, I hadn’t eaten for a long time, so I had no energy, but the food here is delicious and the nurses encourage me to eat. Now everybody is saying I’ve got colour in my cheeks – it’s amazing.

The nurses offered to take my bed outside

There’s a lovely bath here that I can use, and I have a beautiful view of the garden outside of my room, I can watch the squirrels and birds feeding on the bird table. The nurses even offered to take my hospice bed outside if I wanted them to. Because of my condition, I wake up and I don’t know what day it is. I’ve been FaceTiming friends and family thinking it was the evening, but it’s actually been the morning. The nurses write down on a board what day it is and who is supporting me, which is so simple but so helpful for me.

When I first arrived, I told the staff that I love dark, West Indian rum. They told me I can have some here, and so I have my little rum nightcap, which is lovely. Nothing is off limits.
— Lisa

The healthcare assistants and nurses always find time to come and charge my electrical devices, which keep me in touch with family and friends. They’re constantly busy helping people, I can hear their buzzers going off all the time calling them into different rooms, but they still find time to come and charge my things for me and spend some time with me.

A sense of achievement

The hospice has got a fantastic physiotherapist team who have helped me to use the gym. I’ve even taken four steps, which is amazing. It’s not just the sense of achievement for me, it’s the feedback the team gives. I constantly get praised and encouraged. I never realised how important encouragement was until I came here. They have given me some exercises, and I do what I can to try to get my body working.

We’re all dying… I’m one of them

I’ve had a fantastic life, I’ve done everything I’ve wanted to do, I’ve been everywhere I wanted to go. I’m now doing my bucket list. I’ve jumped out of aeroplanes, I’ve gone down to the Spinnaker Tower, I just love doing something different. I’d love to go on a zip-wire, in fact I had a joke with the team here about the hoist in my room!

It was frightening when I first heard the word “hospice” because I just thought of dying people. There’s nothing wrong with dying people, we’re all dying, but it scared me to realise that I’m actually one of them. Now, I’m not afraid of dying. In fact, sometimes, I think it’s going to be a release. But, I’ve always been a fighter and I’m not ready to give in yet.

Complete Article ↪HERE↩!

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A cancer patient had decided how to die.

— Here’s what I learned from her.

For those with a terminal diagnosis, it’s getting easier to control death, but the process remains complex

By

I first learned about “medical aid in dying” last spring when my sister, Julie, who suffered from advanced ovarian cancer, chose to end her life — in accordance with New Jersey law — after all realistic treatments had been exhausted and the pain medicines prescribed could no longer alleviate her suffering. At that time I didn’t know anyone else who had taken this step. While Julie’s hospice social worker provided answers to our questions, there was much I didn’t know about medical aid in dying at the time she died at age 61, much that I wish I’d understood better.

After Julie’s death, Lynda Shannon Bluestein, 76, became one of my teachers. The married mother of two also suffered from late-stage ovarian — and fallopian — cancer.

In a series of conversations last fall Bluestein told me she had wanted to plan for medical aid in dying when her condition worsened, but medical aid in dying, or MAID, is not legal in her home state of Connecticut. However, it was legal in nearby Vermont, but barred to nonresidents. Last year Bluestein sued the state to eliminate the residency requirement, which put her on front pages throughout New England.

Last March, when her chemotherapy regimen become too much to bear, she stopped treatment and began hospice care. By May she’d won her court case and the right to utilize Vermont’s medical aid in dying procedures

Like others who want to use life-ending medications, Bluestein had to follow a carefully prescribed process, which begins with a terminal diagnosis. Following Vermont’s MAID law, known as Act 39, Bluestein made two verbal requests to her attending doctor, at least 15 days apart, then made a written request signed by two witnesses who were 18 or older.

As she told me, “My two witnesses had no interest in my estate and no influence on my life [and] they weren’t related to me in any way.” (This ended up later sparking a journalism controversy when it turned out one of the witnesses was a columnist from the Boston Globe, who had been writing about Bluestein.) As a final step, a second physician reconfirmed that she met all the qualifying criteria.

By October, when we first spoke, Bluestein had met all the requirements. And so Diana Barnard, a Vermont family medicine doctor who is board certified in hospice and palliative care, called in the prescription for the mix of sedatives and barbiturates to the one pharmacy in the state that dispenses them. They would be held there until Bluestein needed them and would cost her $700 out of pocket, since Medicare, her insurance provider, does not provide coverage.

I spoke with Barnard about what happens during the procedure. “It’s harder to hasten a death than you might imagine,” she said. Five powerful medications are currently used, including diazepam, digoxin, morphine sulfate, amitriptyline, and phenobarbital. Death usually comes within 90 to 120 minutes but can take longer, she explained.

Bluestein completely understood what would happen after she swallowed the lethal mix of medicines. When we last spoke by phone, she told me she worried that if she waited too long, she’d be unable to ingest the drugs or would throw them up. When it became clear over the year end holidays that her health was deteriorating rapidly, she chose her date.

On Jan. 3, she and husband, Paul, drove to a private hospice facility that provides “a safe and caring space” for patients to end their lives.

Barnard explained that when a patient is ready to take the meds, they, a relative or friend would mix the drugs with water or apple juice. It’s crucial to imbibe the entire potion within two minutes for the greatest efficacy, said Barnard. Within a couple of minutes, patients lose consciousness, she said, and “appear to be unaware and not experiencing external stimuli,” with just the heart and lungs still working. Then comes the waiting for the end.

The 2022 Oregon Death With Dignity annual summary reported rare complications such as difficulty swallowing and regurgitation, but Barnard said there are precautions that can prevent most of them. (Oregon is one of 10 states plus the District of Columbia that now allow MAID.)

For instance, Barnard makes sure her patients can swallow effectively and can drink the whole mixture at once (some people practice with a placebo or view a video enactment of how to take these drugs at bedside).

On the morning of Jan. 4, now in Vermont, Bluestein and her husband Paul got up early, he said, and after the rest of the family arrived, he gave her the premedication (which makes the patient calm and drowsy, though not too drowsy to take the next step). After 30 minutes, the hospice owner came in to mix up the life-ending cocktail. He asked her if she was ready, and according to Paul she replied, “I’m so happy I don’t have to suffer anymore.” She drank it all — quickly.

Bluestein was unconscious within five minutes, her husband said. “She looked like she had fallen asleep peacefully. … A lot of the pain that was in her face went away, and I was grateful.” She was pronounced dead by a hospice nurse after just 25 minutes.

A few weeks after Bluestein’s death, I asked Paul Bluestein about the pain she had endured. He replied in a text: “There are some things in life no one should have to see and one of them is watching someone you love in pain.” It was “intolerable” and “undescribable.”

During my last phone call with Bluestein, she made a point to say that making her plan “was extraordinarily difficult. You really have to want to do this a lot, have a fair amount of money, a lot of flexibility, and be very well connected to accomplish this.”

I understood exactly what she meant, as the same had been true for my sister, who, while suffering, had to arrange this last medical procedure.

For critics who fear that MAID could make it too easy for someone to take their own life, or to pressure someone else to take theirs, I offer Bluestein’s words, along with my sister’s experience.

It’s not an easy process, and requires deliberation and intent, and the sign-off from others. But it offers an end to much pain and suffering, and that is a gift to those like my sister and Lynda Bluestein.

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