Cultural Aspects of Death and Dying


While the end of life experience is universal, the behaviors associated with expressing grief are very much culturally bound. Death and grief being normal life events, all cultures have developed ways to cope with death in a respectful manner, and interfering with these practices can disrupt people’s ability to cope during the grieving process. While health care providers cannot be expected to know the mourning ceremonies and traditions of each family’s culture, understanding some basics about how different cultures may prepare for and respond to death is important. Though difficult to ask, there are crucial questions that need to be part of conversations between doctors and nurses and families. For example:

pic_3119What are the cultural rituals for coping with dying, the deceased person’s body, the final arrangements for the body and honoring the death?

What are the family’s beliefs about what happens after death?

  • What does the family consider to be the roles of each family member in handling the death?
  • Who should the doctor talk to about test results or diagnosis?
  • Are certain types of death less acceptable (for example, suicide) or are certain types of death especially hard to handle for that culture (for example, the death of a child – this example may seem too obvious, but in countries with high infant mortality, there are indeed different attitudes about the loss of children.)3

This list of questions is so important because patients and families should be viewed as a source of knowledge about their special/cultural needs and norms – but health care professionals sometimes are at a loss about what to ask under such trying circumstances. There is perhaps no area where reliance on cultural reference books is less useful. The degree of acculturation is absolutely paramount in determining the beliefs and traditions a family will follow when coping with impending death, post-death arrangements and mourning. While we can find many similarities across cultures, such as wearing black as a sign of mourning, there are always exceptions. In China, for example, white is the color of death and mourning. Part of why the degree of acculturation is highly significant is that blending belief systems becomes more pronounced in highly acculturated persons. There are places in the world where accommodation is made for multiple faiths. For example, in Nigeria there is a triple heritage of Christianity, Islam, and ancestor worship2. Similar blending can be found in Caribbean nations and Mexico where Catholicism can be mixed with indigenous folk beliefs like Voodoo and Curanderismo. Another layer of expectation comes with living in the United States culture and relying on the Western medical culture. The mix of cultural/religious attitudes and behaviors surrounding death and dying can become very complex indeed. And when a death actually occurs, some individuals suddenly choose to break with tradition entirely, often creating chaos within families.

Burial ceremony of late Hassan Fanstastic at Baqdaad Village, outskirts of Mogadishu. Hassan was the Director of local Radio and Television – Shabelle. He became the Shabelle Director killed since 2007. He was Murdered on Saturday 28 January, 2012 near his home in Wadajir district.
Burial ceremony of late Hassan Fanstastic at Baqdaad Village, outskirts of Mogadishu. Hassan was the Director of local Radio and Television – Shabelle. He became the Shabelle Director killed since 2007. He was Murdered on Saturday 28 January, 2012 near his home in Wadajir district.

What follows in this article are some important points of consideration, but the list is introductory in nature at best. There is a strong focus on religions because religion can be thought of as a cultural system of meaning that helps to solve problems of uncertainty, powerlessness, and scarcity that death creates. In placing death within a religious perspective, bereaved persons find meaning for an event that for many is inexplicable.1 (Each underlined heading is a link to further resources for readers.)

Monotheistic Religions: Especially since the events of 911 changed many people’s views of Muslims, it is important to be aware that Christians and Muslims both believe death is a transition to a more glorious place and both believe in the sovereignty of a God (Allah) in matters of loss and take consolation in phrases such as “Allah giveth and Allah taketh away.” Both are also faiths springing from a single scripture, founder or sacred place. Readings from the Koran or Bible are important parts of the recognizing the departure of a loved one from this life. Similarly, in the Jewish faith, there is the expression mourners recite a few minutes before a funeral begins: “The Lord has given and the Lord has taken, blessed be the name of the Lord.” Both Muslims and Christians believe in the afterlife and view worldly life much in terms of preparing for eternal life. In the Jewish tradition, the focus is on the purpose of earthly life, which is to fulfill one’s duties to god and one’s fellow man. Succeeding at this brings reward, failing at it brings punishment.

The traditions around death and dying differ greatly across all three major monotheistic religious systems (as well as within different branches of each faith, i.e. Jehovah’s Witnesses and Mormonism in Christianity). They are highly nuanced and very hard for outsiders to understand thoroughly. Key rituals and practices that differ widely between religions include the preparation of the deceased person’s body, the permissibility of organ donation, and the choosing of cremation vs. burial.

Ancestor Worship: The premise of ancestor worship is based on understanding that the course of life is cyclical not linear. 7411588_origThose who are dead may not be seen physically, but are alive in a different world and/or can reincarnate in new births. Ancestor worship in various forms can be found in many parts of the world and is very strong in parts of Africa and Asia. Many Native Americans and Buddhists alike believe that the living co-exist with the dead. A central theme in all ancestor worship is that the lives of the dead may have supernatural powers over those in the living world – the ability to bless, curse, give or take life. In some cultures, worship of the dead is important, and includes making offerings of food, money, clothing, and blessings. In China there is the annual observance of “sweeping the graves” and as its name denotes, it is a time for people to tend the graves of the departed ones. In Mexico, there is The Day of the Dead (Dia de los Muertos), a holiday that focuses on gatherings of family and friends to pray for and remember those who have died. The Day of the Dead is also celebrated by many Latin Americans living in the U.S. and Canada. The intent of the celebration is to encourage visits by the souls of the departed so that those souls will hear the prayers and the comments of the living directed at them. It makes sense that in cultures where ancestor worship is common, the acceptance of organ donation and cremation may be low.

budhist monk mummy

Buddhism and Hinduism: Hinduism does not have roots springing from a single scripture, founder or sacred place. It is more like an umbrella term describing a set of philosophies and ways of life. Buddhism has a single founder, but the Buddha is not prayed to in the same sense as a God or Allah. Buddhism is also a set of philosophies for living. There are marked differences between the two, or course, but in both death is not seen as the end of life; it is merely the end of the body we inhabit in this life. The spirit remains and will seek attachment to a new body and a new “life” – in Buddhism it is called a “kulpa,” which is a unit of time. Where a given person will be born again is a result of the past and the accumulation of positive and negative action, and the result of karma. Followers of both traditions keep in mind the impermanence of life. The transition of a soul to a new life is very important so both traditions observe specific rituals at the time of dying and the handling of the body. The corpse of a Buddhist should not be touched for 3-8 hours after breathing ceases as the spirit lingers on for some time. Hindus believe the body of the dead must be bathed, massaged in oils, dressed in new clothes, and then cremated before the next sunrise. It follows that cremation would be acceptable in a faith where the soul will be released to find another body to inhabit.

Truth-telling to Patients: In collectivist cultures, the good of the individual is often so enmeshed with the good of the family Death-03or in-group that family members may have a greater say in health care decisions than the patient does in some circumstances. In many countries, family members may become very upset if a physician reveals bad news directly to the patient. Families and patients may place great value on the right NOT to know! This is completely at odds with the standards set forth in the Patient Self Determination Act which secures certain rights legally for all patients in the U.S. The health care system needs to be flexible enough to accommodate communication patterns that look different from those within the informed-consent tradition which insists doctors and nurses tell patients everything. So, a key question in cross-cultural health care situations would be: Who do you want me to talk to about test results or diagnosis?

chineseExpressions of Grief: In some cultures, showing grief, including wailing, is expected of mourners because the more torment displayed and the more people crying, the more the person was loved. In other cultures, restraint is expected. Rules in Egypt and Bali, both Islamic countries, are opposite; in Bali women may be strongly discouraged from crying, while in Egypt women are considered abnormal if they don’t nearly incapacitate themselves with demonstrative weeping. In Japan, it is extremely important not to show one’s grief for a number of reasons. Death should be seen as a time of liberation and not sorrow, and one should bear up under misfortune with strength and acceptance. One never does anything to make someone else uncomfortable. In Latino cultures, it may be appropriate for women to wail, but men are not expected to show overt emotion due to “machismo.” In China, hiring professional wailers may be customary in funerals, which may sound odd, but this was also a common practice in Victorian England.

Conclusion: For health care professionals, providing culturally sensitive bereavement/end of life care is understandably an MRELMASTW9Fissue of discomfort. Language and cultural barriers obviously compound the challenges of being professionally appropriate and compassionate. Patients and families may be in need of compassion, advice, and guidance from doctors and nurses, but often the realities of a given situation include a press for time and both physical and emotional exhaustion among providers and families. It happens – sometimes we simply fail, in the moment, to express sufficient sensitivity and warmth when critical decisions must be made. The clinical facts are immediate and demand logical linear thinking which is natural for those trained in the Western medical tradition. For many cultures, such a direct approach may seem harsh, and decisions about something like organ donation might be experienced as inhumane immediately upon death. The questions suggested in this article can be used to ease some of the communication challenges and facilitate more openness between health care professionals and families around death and dying. Of course they should be tailored to the context of a given situation.

Complete Article HERE!

As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die

By Rebecca Hersher

Six years after he was diagnosed with early onset Alzheimer's disease, Greg O'Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.
Six years after he was diagnosed with early onset Alzheimer’s disease, Greg O’Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.

In this installment of NPR’s series Inside Alzheimer’s, we hear from Greg O’Brien about his decision to forgo treatment for another life-threatening illness. A longtime journalist in Cape Cod, Mass., O’Brien was diagnosed with early onset Alzheimer’s disease in 2009.

These days, Greg O’Brien is thinking differently about the future. It’s been six years since his Alzheimer’s diagnosis, and he’s shared with NPR listeners a lot about his fight to maintain what’s left of his memory. He’s shared his struggles with losing independence, and with helping his close-knit family deal with his illness.

What O’Brien hasn’t wanted to talk about until now is the diagnosis he got two weeks before he and his family learned he had Alzheimer’s disease: O’Brien also has stage 3 prostate cancer. Now, as his Alzheimer’s symptoms worsen, the cancer is increasingly on his mind.

“I just don’t know how much longer I can keep putting up this fight,” he says.

This summer, Greg and his wife, Mary Catherine O’Brien, have started talking about how he wants to spend the final years of his life — and what Greg calls his “exit strategy.”

He hopes the cancer will kill him before the Alzheimer’s disease completely robs him of his identity.

Recently Greg sat down with his close friend and primary care physician, Dr. Barry Conant, and with Mary Catherine, to talk about that decision and about Greg’s prognosis.

Interview Highlights

Dr. Barry Conant on the ethics of not treating Greg’s prostate cancer

I think honestly, in a perverse kind of a way, it gives you solace.

Maybe it will shorten the period in your life which you find right now to be something you want to avoid, and so far you’re only talking about neglect of a potentially terminal condition.

If you decided to be more proactive, that’s where the discussion becomes more interesting. Some people would say I’m violating 001my Hippocratic oath by discussing that, but I think — I don’t feel uncomfortable having that discussion. And, while you still have the ability to reason, it wouldn’t be a bad discussion to have with your family.

Conant — who, like O’Brien, has cancer — consoles Greg that his family will be OK

Nobody is indispensable — nobody. And if you or I were to immediately vanish from the Earth, our families would do fine. They have family support. They have friends’ support. They’re in a nice community. It’s a terrible sense of loss that they’ll have, but they will do fine. And if they’re honest with themselves, they’d realize that they’re going to do fine.

Greg and Mary Catherine discuss Greg’s prognosis

Mary Catherine: Going through Alzheimer’s, it’s not the plan.

Greg: Where do we go from here?

Mary Catherine: That I don’t know. …

Greg: It’s getting so frustrating for me. I mean I care, obviously, deeply about you and the kids. I could see 3 or 4 more years of this, but I can’t keep the fight up at this level. We talked about that the other night. How did you feel about that?

Mary Catherine: Wow … (chokes up). I don’t want to talk about it.

Greg: Can you see it coming?

Mary Catherine: Yeah, I can. Fast.

Greg: Are you OK with me not treating the prostate cancer?

Mary Catherine: Only because you’re OK with it. You need that exit strategy, and the exit strategy with Alzheimer’s is horrible. Well, they’re both horrible.

Greg: You know I’ve been there with my grandfather and mother, and don’t want to take my family and friends to that place.

Mary Catherine: Right. I know. I understand.

Greg: Do you still love me, dear?

Mary Catherine: Yes, I do, dear.

Greg: I love you, too.

Complete Article HERE!

Caring for someone who is terminally ill

The following information is primarily for our friends in the UK.  However, it’s a great checklist for the rest of us too.


It’s important to understand the financial, practical and emotional support available to you and the person you care for. Information on the support that may be available to you or the person you care for is provided below.

sick child

Financial support

You or the person you care for may be entitled to some financial support. Some information on this is provided below.

Benefits for the person you care for

The person you care for may be entitled to:

  • Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
  • Attendance Allowance, if they are 65 or over and need help with personal care
  • Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work

There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.

Carer’s Allowance

As a carer, you may be entitled to receive Carer’s Allowance. You can keep getting this for up to 12 weeks if the person you care for goes into hospital and for up to 4 weeks if they go into a care home (provided certain conditions are met). If the person you care for dies, Carer’s Allowance will usually stop after eight weeks.

Practical support

There’s lots of support available from different organisations for carers. It’s important that you have enough practical and emotional support in your caring role.

Support from social services

The social services department of your local Trust may provide a range of social care services and equipment for terminally ill people.

Assessments from your local Trust

An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you, as a carer, are entitled to a carer’s assessment.

Emotional support

Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you’re caring for and other family members may also benefit from counseling.

Support groups for carers

There may be support groups for carers in your local area. This could give you the opportunity to talk to other people in the same situation as yourself.

Help with caring for someone at home

There are different options to help you care for someone at home.

Medical and nursing care

If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their local doctor (GP). Services that may be available include:

  • visits from a district or community nurse (for example, to change dressings, give injections or help with bathing or toileting)
  • help with getting the person into and out of bed

Services that are provided by the local Trusts may vary from region to region.

Short-term breaks

Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local Trust.

Employing a professional carer

If you’re caring for someone who needs a lot of care, you may choose to employ a professional carer (or carers) to share the caring role with you.

Alternatives to caring for someone at home

Hospice care

Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.

Hospices specialise in palliative care, which aims to make the end of a person’s life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counseling.

Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.

There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.

In Northern Ireland, hospice care is provided by:

Hospital care

There may be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, your local Trust will work to meet any continuing health and social care needs. The person’s needs should be assessed before they return home and a package of care arranged for them.

Care homes

If the person you care for needs a level of care and support that cannot be provided in their own home, a residential care or nursing home could be the answer. You can find detailed information about care homes in the health and well-being section of nidirect.

Helping the person you care for prepare for death

It’s natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want (or don’t want) at the end of their life. The ‘rights and responsibilities’ section of nidirect contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.

When the person you care for dies

There are things you may need to consider if you care for a terminally ill person.

What to do after a death

When someone dies, there are some things you will need to do straight away, or within the first few days and weeks.

Bereavement counseling

When someone close to you dies, you may benefit from counseling from a specialist bereavement counsellor. The charity Cruse Bereavement Care can help with this.

Benefits and bereavement

If the person you care for dies, Carers Allowance will usually stop after eight weeks. If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:

  • bereavement payment; a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
  • widowed parents allowance for people who have dependent children
  • bereavement allowance for those aged 45 and over when their spouse or civil partner dies

Complete Article HERE!

Why use your eventual death as an excuse to try something new?


Bucket lists are morbid and moronic. Let’s get rid of them

Bucket lists gained mass appeal after they were featured in a Hollywood film.

Before each one of us dies, let’s wipe the “bucket list” from our collective vocabulary.

I hate the term “the bucket list.” The phrase, a list of things one wants to do in life before one dies or “kicks the bucket”, is the kind of hackneyed, cliche, stupid and insipid term only we Americans can come up with.

Even worse, “the bucket list” has become an excuse for people to couch things they actually desire to try doing as only socially acceptable if framed in the face of their death. It’s as if pleasure, curiosity and fun weren’t reasons enough for action.

If you want to try doing something others might find strange or unorthodox –write a novel, learn to tap dance, engage in a rim job, field dress a deer, climb Everest, go out in drag for a night – why do you need any justification at all? And certainly, why would you need an explanation that is only justifiable in terms of kicking the bucket?

According to the Wall Street Journal, the phrase “bucket list” comes to us from the banal mind of screenwriter Justin Zackham, who developed a list of things he wanted to do before he died. Years later, his “bucket list” became the title of his corny 2007 film starring Jack Nicholson and Morgan Freeman. It’s about two old men with terminal cancer who want to live it up before they die. That, if anyone at all, is who should be using the term “bucket list”. They want to do something with the finite time they know they have left? Fine.

But bucket list has trickled down to everday use by the perfectly healthy, the exceptionally young, and most of all, to douche bags. I realized this at Burning Man last week. Often, when I asked exceptionally boring people what had drawn them to Black Rock City, they’d say: “It was on my bucket list!”

Really? You wanted to schlep out to the desert and face freezing lows, scorching highs and soul crushing techno simply because you’re going to die someday?

If you want to try something, just own that you want to try it. At Burning Man, I was much more drawn to “trysexuals” (“I’ll try anything once”) than to bucket listers. It’s a very different dynamic to say you want to try something because you’re alive, and you’re curious, and you’re open to maybe finding something you might like than it is to justifying something because of your ultimate demise. If you want to try skydiving, skydive. If you want to try going to an orgy, go to that orgy. But be open to the experience beyond it being a mere bucket list check off, with one foot already mentally in your grave. Who knows, you might enjoy yourself.

A bucket list is a way of giving power to others as you nakedly (even if unconsciously) seek their justification for your choices. The bucket list, God help me, is forcing me to validate the one part of Ayn Rand’s objectivist philosophywhich registered with me when I read The Fountainhead years ago. People often place more importance upon the mirror of others’ judgments about them than they do upon their own desires. If you want to do something weird, don’t worry about explaining why you want to slake your desire. You needn’t rationalize your choices as “bucket list worthy” to others who deem them heretical.

There’s a funny dynamic sometimes when I go on a long trip while I’m out of work. When I backpacked through Asia and Europe in 2013, people (usually friends chained to a spouse, children and a mortgage) would sometimes awkwardly say to me: “Well, it will be the trip of a lifetime!” It was a good trip, but just one of many great journeys I’ve taken in my life so far. My adventures might interrupt someone else’s idea of what’s “normal.” But travel isn’t something I do to fulfil my “bucket list”; travel is a way of life for me. I do not rush into a trip thinking: “Good Christ, I could die tomorrow!” I don’t travel in place of the stable job or partner or kids I may or may not ever have. I do it as often as I can because it brings me joy.

Referring to your eventual death as an excuse to do something privileges the future instead of the present. We are all going to die, it is true. I am not abovemorbid thoughts and thinking about death. But to focus on the end of life as a reason to do things, rather than on the fact that you’re alive right now to do them? I cringe when I’ve hear undergraduates in college talk about their bucket list, having already decided they will work for 42 years, lead a certain kind of life, retire – and at prescribed points in that plan, check off fun things before they croak.

“Bucket list” thinking is epitomized for me in the interactive “Before I Die…” art project”, a chalkboard installation with the words “Before I die I want to______” Viewers fill in the blanks, and one turned up at Burning Man this year. If I had my way, we’d stop thinking so much about our eventual annihilation when we strive for fun in our lives … and we’d kick the bucket list to the curb.

 Complete Article HERE!

When Your Loved One’s Last Wish Was ‘No Funeral’



WebOver the past year, I’ve experienced several losses that, at the request of the deceased, did not include funerals. Grief rituals are central to my mourning process, but there’s no negotiating with the dead. In the absence of the most standard of ceremonies, how do you give expression to your grief while respecting someone’s final wish for “no funeral, please?” Through personal experience, and conversations with friends and readers who’ve faced the same scenario, here are seven ways to do just that.

  1. Write and place an obituary in their local paper.

My 93-year-old grandmother died in May, and had insisted she didn’t want a funeral. My grandfather had planned to write the obituary, but amid his grief, the project was understandably pushed aside. Yet the idea of my much-beloved grandmother’s life and death going unrecognized publicly was an uncomfortable one.So I contacted surviving relatives to get the details of Gram’s early life, and placed obituaries in the papers of her East Coast childhood and West Coast adulthood. Plotting her life achievements through words provided a way to process my grief. Seeing her name, picture and story in print granted me a sense that she isn’t forgotten.

  1. Take up one of their skills or hobbies.

Was she a yoga aficionado or competitive knitter? Was he a golfer? Engage in an activity that reminds you of the deceased and try to discover what they loved so much about it.

  1. Assemble an homage to the deceased in your home.

Bring out your memories of him or her — photos, postcards, ticket stubs, keepsakes — and display them with a memorial candle in your home. When the person crosses your mind, light the candle and say a few words. Rinse and repeat as needed.

  1. Post a personal tribute with photos on Facebook and/or your blog.

What would you have said at their funeral? Which story or picture would you have shared with other mourners? Craft your tribute and tell it to Facebook or your blog followers.

  1. Donate to their favorite cause.

I was crushed last September to hear that a former L.A. colleague and brilliant writer had died of cancer. She’d quietly quit her job, told no one that the disease she’d beat years ago had returned, and entered a nursing home. The news that she’d donated her body to science and didn’t want a memorial was a one-two punch. For weeks, I struggled with how to honor this woman who’d been a generous mentor early in my career. Since she was a self-proclaimed “cat lady,” I made a donation in her name to Kitten Rescue Los Angeles. The act didn’t provide the same degree of catharsis as a funeral, but it offered a personalized way to honor her legacy.

  1. Host a dinner or cocktail hour in their honor.

Gather would-be funeral attendees for a meal where signature drinks and dishes loved by the deceased are served. To encourage guests to exchange favorite memories around the table, start off by sharing yours.

  1. Plan a pilgrimage to sites charged with their memory.

After the uncle of one of my friends died suddenly, the family learned that he had not wanted a funeral. In lieu of it, they gathered in his hometown and did a walking tour that included his childhood home, the church where he was confirmed and the lake where he and his surviving sister had ice-skated. Through this expedition, the family was able to respect the uncle’s wishes while sharing the tears and memories that would accompany a formal service.

Complete Article HERE!

Do you want to die at home? Here’s why you probably won’t.

Hospice care for terminally ill patients
Hospice volunteers caress the hands of terminally ill patient Annabelle Martin, 92, as her health quickly declined at the Hospice of Saint John on September 1, 2009 in Lakewood, Colorado.


Late on a Sunday night in the hospital, my Haitian patient’s wife came in to help translate. I don’t know what I would have done without her. I needed to tell my patient that the tumor growing in his chest was pressing on his aorta. If he needed CPR overnight, the chest compressions might prove fatal.

As I explained all this, I looked back and forth from the wife to the patient like a spectator watching a tennis match. Her face contorted in horror at the news, but he remained stoic, with his arms crossed, and kept repeating one word: lakay. Finally I asked the wife, “What islakay?” She looked at me and said: “Home. He wants to go home.”

One of the few things that people across all backgrounds and cultures value in common is home. An overwhelming amount of research from around the world has shown that home is where most patients and their family members would like to take their last breath. But not everyone has that option.

Often, the underlying disease, rather than the patient’s wishes, dictates their place of death. Patients with cancer, for example, die at home more often than those with heart disease. (Cancer progresses in a more predictable way, so those patients are more likely to use hospice services at home.)

Social support is another factor. Frequently, those close to the end require 24-hour supervision, which a relative may not be able to provide. And caring for the terminally ill is extremely taxing — for caregiver and patient — so hospitals seem like the better option.

Geography can also determine where one is more likely to die. How far one lives from a hospital is directly associated with the chances of dying there. No surprise, then, that the nation with the greatest density of hospital beds — Japan — is also where patients are most likely to die in one. (On the flip side, in areas without adequate medical and hospice resources, patients may die at home when they could have been saved by professional care.)

Race, finally, plays a role. Although the proportion of home deaths since the 1980s has risen, 43% of blacks and 44% of Latinos die in hospitals, compared with 34% of whites. (In the 1970s, the percentage of blacks and whites who died in the hospital was the same: 54%.)

That’s in part because home care is expensive, and whites are more likely than other racial and ethnic groups to have access to home services through their insurance.

Culture, however, often is an even more important determinant. Many studies have found that minorities generally receive fewer medical services over the course of their lives when they are relatively stable. But at the end of life, minorities are more likely to receive aggressive care, are more likely to want resuscitation and intubation, and therefore end up spending more time in the intensive care unit than whites.

One important solution to so many people dying in hospitals would be to build more hospice homes in inner cities. But if we want more people to have the option of dying in their own homes, we need to push insurance providers to increase end-of-life options. Although most insurance pays for hospice care, many patients also require increased support at home, which is not typically covered.

But we also need a culture change, convincing patients and their families that more is not always better in healthcare, particularly when death is inevitable.

Many patients want to die at home but are pressured by relatives and even some physicians to keep trying Hail Mary procedures that end up prolonging suffering. Having the option to die at home is perhaps one means for patients to regain some semblance of control.

Given how advanced my Haitian patient’s cancer was, I knew that there was no way we could win this war, which made me desperate for every small victory. So I savored the moment as he collected his belongings to go home to hospice services, knowing that a death in one’s own bed was a privilege that many do not have.

Complete Article HERE!

The courage to die



The day he was to die, Vernon Gearhard had breakfast with Fran, his wife of 57 years, their three children and their spouses.

He listened to some of his favorite music – classical pianist Johannes Brahms and opera singer Kathleen Battle – and around noon, he and Fran sat on their terrace. The sun peeked out from behind rain clouds and two bald eagles and several raven flew around nearby, lingering in the area as the couple watched.

The 84-year-old master mason had planned for this day. Friends and family had been visiting for the past month, many from nearby towns, others from as far away as Vermont. He had spent the last week with his family, including his seven grandchildren and three great-grandchildren.

It was time.

002The medication – powder from 100 capsules of the barbiturate Seconal – had been mixed with water, creating a slurry-type paste that Vern could drink. He went into the bedroom and grabbed the bar he needed to use to pull himself from his wheelchair into a sitting position on the bed.

“This is the last damn time I have to grab this bar,” he told his wife, Fran.

He drank the medicinal slurry, washing it down with orange juice. His eyes rolled backward and he lay back on the bed. Thirty minutes later, surrounded by his family, his heart stopped beating.

“Just our children came in while he was dying,” Fran said. “I promised him that someone would be touching him the whole time.” She stayed with his body until the hearse arrived.

Fran remembers that day – March 17, 2015 – with tears and joy.

“It was so easy for him, finally,” she said. “It has been a long time since anything had been easy. … It was really a joyful thing.”

Vern, who had Parkinson’s disease, was given less than six months to live when he decided to end his life by taking prescribed medication through Oregon’s Death With Dignity Act.

On President’s Day, Feb. 16, 2015, Fran and Vern gathered their family together and told them of his decision. Their three children and their spouses were supportive. So was the rest of the family.

That support, Fran said, made it possible. “The kids really, really, really were there for us. I couldn’t have done it without their support.”

Since Oregon’s Death With Dignity Act was enacted in 1997 more than 860 terminally ill people have chosen to use it to end their lives. To do so, a patient must get the agreement of two doctors that he or she has six months or less to live. The patient also must go through an intensive interview process to determine his or her mental state and decision-making capabilities.

It’s not easy, Fran said, noting that the Gearhards had help from Compassion and Choices, a nonprofit advocacy group that provides trained volunteers and consultants to help terminally ill patients seeking end-of-life options. The Gearhards connected by phone with a Compassion and Choices volunteer in Ashland.003

Vern was diagnosed with Parkinson’s disease about 20 years ago, when he was in his early 60s though family members say he had symptoms of the disease, including tremors, in his late 50s. He took medication and led a physically active lifestyle, which seemed to keep the disease’s symptoms at bay.

Parkinson’s disease is a progressive disorder of the nervous system that affects movement. It develops gradually, and early symptoms include tremors. In the later stages, muscle stiffness makes it difficult or impossible for patients to walk and take care of themselves.

Vern was born in Chicago, and grew up in Martinez, Calif. He joined the Navy and served in the Korean War from 1950-54. He then attended Cal Poly on the GI Bill and earned a degree in agronomy. Vern and Fran began dating while she was in college – she earned an education degree from San Francisco State University. They married her sophomore year in college. Several years later they bought acreage north of Merrill in 1965 and started farming.

Fran taught for 34 years, 28 of those as a fifth-grade teacher at Shasta Elementary in Klamath Falls. They raised three children – Theresa, Marcus and Paul.

The family farmed for 15 years, but masonry was in Vern’s blood. His grandfather, an Austrian immigrant, was a mason and Vern apprenticed under him. As farming changed, Vern spent more time on masonry and eventually worked at it fulltime, earning a reputation as master mason with an artistic and signature style.

After his Parkinson’s diagnosis, Vern continued to work as a master mason, creating artistic fireplaces, homes and other pieces for private clients as well as for local businesses. Some of his more prominent pieces include the Klamath Rotary sign downtown, the sign at the Herald and News building off Foothills Boulevard and the rock sign at Kla-Mo-Ya Casino off Highway 97 near Chiloquin.

004He helped build his house, high on a hill, an artistic nod to a mason’s mastery of his craft. Inside, a rock fireplace dominates the great room and touches of his work are throughout.

Vern loved classical music, opera, and good literature. He belonged to two book groups and owned the first version of Kindle, an electronic book reader that launched in November 2007. By the time he died, he owned his eighth Kindle.

He also was a huge San Francisco Giants fan. “He always recorded the games he couldn’t watch,” Fran recalled. “God pity you if you told him the score before he could watch it.”

When he was 80, his symptoms — tremors, muscle and balance issues — forced him to retire. The disease progressed quickly after he stopped working. First, he had to use a cane and later, a wheelchair.

As the disease progressed, Vern needed help with everyday tasks, and then could no longer use his hands well enough to turn the pages on his Kindle. In his last month, he was sleeping nearly 20 hours a day and had limited energy.

“When he had to quit work, that was huge. When he had to quit driving, that was huge,” Fran said. “When he lost the ability to read, that was it.”

In November 2014, Fran, 78, faced her own mortality when she was diagnosed with stage 4 colon cancer. She decided to go through treatment so she could be there for Vern, who was thinking about his end-of-life options. She had surgery, followed with chemotherapy in January, and currently is cancer free.

Vern approached his doctor, who said though he supported Vern’s decision, he couldn’t write the Death With Dignity prescription. His physician did prescribe hospice, which is for patients who have been diagnosed with six months or less to live.

The Gearhards were able to find two other Klamath Falls physicians who were willing to consider Vern’s decision and work with them. The law requires both a prescribing physician and a consulting physician to agree on a diagnosis and prognosis as well as whether Vern was mentally capable of making the decision to end his life.003

Klamath Hospice helped with Vern’s care and supported the family during his last months of life. Hospice does not advocate for or against the Death With Dignity Act, but provides support for patients and their families, Fran said.

When the time came, the law required that Vern take the prescription himself, holding the mug and drinking the medication without aid.

“His big worry was that he would be beyond the point where he could do it on his own,” said Dennis Ross, Vern’s son-in-law. “Your ability to follow through could be ended at any time.”

Ross was there the day of Vern’s death. An hour before he was to take the prescription, he had to take anti-nausea medication. The medication made him sleepy and he told his family: “I’m getting sleepy. We better get on with it.”

Ross, who had watched his parents die, believes the dying should have choices. His parents lived in California and didn’t have the same end-of-life options Vern did.

He watched Vern’s quality of life decline and supported his decision. “There’re just a thousand little things that take your dignity away,” he said. “It just piles up.”

But the end game is up to the patient.

“You can make all the plans, but when it comes down to drinking that stuff, that’s an incredible amount of courage,” Ross said.

Vern’s memorial was March 21 at his daughter’s home, a rock house he helped build near his own, and cars lined the road as family, clients and friends came to celebrate his life. Vern had picked the music he wanted played at his funeral – Mozart’s “Concerto in D-Minor, Second Movement” and John Lennon’s “Imagine.”

The Concerto in D-Minor was a piece Vern fell in love with in 1981 while he was collecting rock in Langell Valley. “He always listened to classical music while he worked,” Fran said. “That day he came home and said, ‘This is what I want played at my memorial.’ Before he died, he played it for his friends who came to visit, and for the hospice worker.”

Vern was an atheist and was curious about death.

“He always said he wanted to know so he wanted to be aware,” Fran said. “He was always very articulate about his perspective of life and death.”

“For us and for Vern – it was his decision – it was right,” she added. “It’s not for everyone, I understand. I just want to share the opportunity this law gave us.”

Fran recalled her husband’s last hours with joy.

It was around noon, just before the two of them went to sit on the terrace.

“Vern started to sob, and I asked, ‘What’s going on?’ He said, ‘I just feel so much love.’”

Fran smiled. “It’s a story with a beautiful ending.”

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