Category: Philosophy of Living

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I’m dying, and I’d like D.C.’s Death with Dignity Act to help

People attend a House Oversight and Government Reform Committee business meeting at the Rayburn House Office Building in February 2017 for a discussion of D.C.’s Death with Dignity Act.

By Mary Klein

I am dying of ovarian cancer. I do not know how long I have to live. I have endured radical surgery, 65 chemotherapy treatments, countless trips to the emergency room and admissions to the hospital to extend my life. Now, my illness has developed resistance to treatments, and the last two drugs did not slow the growth of my tumors. I can die from a combination of chemotherapy and cancer or from just the cancer itself. I recently decided to cease treatment and pursue palliative care so I can minimize my suffering and maximize the quality of life that I have left with my wife, Stella, and our beloved dog, Adina.

I love my life, but now I need to plan for my death. I would like the option of medical aid in dying, which is authorized under D.C.’s Death with Dignity Act and that took effect in February 2017 for those terminally ill patients who meet strict requirements. The law allows mentally capable terminally ill adults with six months or less to live to get prescription medication they can decide to take if the suffering becomes unbearable, so they can die peacefully in their sleep, at home, surrounded by loved ones.

March 23 was a wonderful day for me and other terminally ill D.C. residents. President Trump signed an omnibus spending bill that did not include a House-passed provision to repeal the law or an administration proposal to thwart funding of its implementation.

Coincidentally, March 23 also was the 20th anniversary of the first prescription for medical aid in dying in the nation, under the Oregon Death With Dignity Act, the model for medical aid-in-dying laws in the District and five other states.

Before the federal spending bill was enacted, I lived in a state of uncertainty. I feared that opponents would be successful at invalidating the law. Fortunately, they were not. The law has been upheld, and the D.C. Department of Health issued rules last June to implement it, but health-care providers have not done the work necessary to allow patients such as me to use it. The threat that the law might be repealed made it unrealistic for doctors, health-care systems and pharmacists to invest the time to develop policies to participate in it. The D.C. Department of Health confirmed at its performance oversight hearing in February before the D.C. Council, at which I testified, that not one resident has obtained a prescription since the law that took effect more than a year ago.

Now, almost two months after the hearing, I still cannot find a physician who is willing to write a prescription for medical aid in dying. I and other terminally ill residents in the District need a compassionate doctor to come forward and embrace this option for dying.

I have been surprised at how many people, including physicians, do not know that medical aid in dying is now legally authorized in the District. Assumptions that congressional opponents would defeat the law brought its full implementation to a standstill.

Now that the immediate threat of the law’s repeal is over, I would like to encourage the D.C. Department of Health to work with health-care advocacy organizations such as Compassion & Choices, which helped implement the Oregon law, to launch an education campaign here and put the law into action. This collective effort would require working with D.C. doctors, health-care systems and pharmacists not only to explain the rules but also to consider any changes to ensure that the law does not discourage participation. Terminally ill patients need to know that medical aid in dying is an option.

It also took five months after the Oregon law went into effect for the first doctor to write a prescription. Once he did, others followed. Oregon now has an end-of-life care system that recognizes this compassionate option for dying.

More than a dozen safeguards in the D.C. law have been time-tested for a combined nearly 40 years in states that have authorized medical aid in dying without a single documented case of abuse or coercion. The D.C. rules are more complicated than those in other states, which might make it harder for terminally ill D.C. residents such as me to access this option to die peacefully in their sleep, at home, surrounded by loved ones. The result would be needless suffering.

It’s time we make compassion the priority of this law.

Complete Article ↪HERE↩!

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There is more than one way to die with dignity

By Ing Wong-Ward

“Who are you here to see?”

On this day, I was at Mount Sinai Hospital, in the oncology ward. The receptionist I usually check in with wasn’t at her desk. I was being greeted by a volunteer. Dark hair, wide eyes and a smile like a child’s doll. High school co-op student, maybe?

I handed over my health card and told her my doctor’s name.

“I’m sorry, I don’t know who she is. What are you here for?”

Her smile widens.

“Because I’m a patient?” I retort.

I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?

What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.

I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.

I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.

This, to put it mildly, complicates things.

My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.

I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.

At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.

The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.

Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.

Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”

That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.

I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.

Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.

That’s why I’ve sought out palliative care. My own research leads me to studies showing that having a palliative-care expert can help me prolong my quality of life through the management of symptoms, such as pain that I know will likely worsen over time. My family doctor concurs, telling me outright that I need this.

This new relationship has enabled me to talk about my greatest fears. After my conversation with my surgeon, I fear dying slowly of sepsis, waiting for my organs to fail. I’ve agreed to a Do Not Resuscitate order, which ensures I won’t be hooked up to machines in the ICU, prolonging The End.

During this particular admission to hospital and based on what my surgeon has said, my choices seem stark. Down the road, I could die slowly from an infection that will shut down my organs, or sign up for a medically assisted death.

Then, my palliative-care doctor arrives at my bedside. She points out I have bounced back from severe, acute episodes before. She also knows I don’t want an assisted death and takes the time to explain there are options available, such as palliative sedation, a process where I can have large doses of morphine to keep me comfortable. She firmly tells me I am not close to needing this. My goal needs to be focused on getting better and getting home, to my daughter.

As she explains this, I start to relax. She’s given me the window I need to live my life, as compromised as it now is. It is not the life I would have chosen, but it still has meaning. My task now is to figure out what that meaning is. And her task is to help me to define my priorities while maximizing the quality of my life with medical therapies and emotional support.

It’s an interesting time to be thinking of my life as a person who is both disabled and has cancer. Less than two years ago, the federal government enacted a new law enabling Canadians with incurable conditions, whose death is foreseeable and are suffering irremediably, to ask a doctor to end their lives.

It’s been called “dying in dignity,” but for me, that’s not the way I want to go, at the hands of a doctor, wielding a poisoned syringe.

I believe no one with a terminal illness should be forced to endure suffering – but, if there is one lesson for me in the past year, death is not the only way to alleviate suffering. Managing physical suffering feels like traveling a winding road. Some days, it feels never-ending; other days, manageable, almost like the life I had before. Some days are so bad, I’m convinced death really is the only relief, but I’m brought back to reality when I think of what I could miss out on.

My life is definitely smaller now. I doubt I will ever work full-time again. I barely leave my apartment. Thanks to my father’s financial generosity, my husband has been able to take unpaid leave from his work to be with me. The time we spend together is precious. Even in its ordinariness, it is meaningful.

I appreciate the world differently now. It is as though time has slowed for me to see the small details of life, whether it be the softness of my bed sheets or watching snow drift down through my apartment window.

I’m trying to live with dignity, as I always have, despite the very real medical indignities I have been subjected to.

Which is why it dismays me greatly there are continuing attempts to make it easier for people without terminal conditions to ask a doctor to end their life. It dismays me that a lobby organization calling itself Dying With Dignity is not actively lobbying for increased access to palliative and hospice care, or advocating for more community supports for people with disabilities to live as productively as possible. In other words, to live with dignity.

We are all going to die, but before we do, each one of us has a right to a good quality of life, even to the very end. Yet too many Canadians do not have adequate access to palliative and hospice care. The lobbying efforts of those to equalize this are rarely discussed in our media.

I’ve chosen my path, thanks to the help of empathetic doctors and my own advocacy. My hope now is that more Canadians have the right to do the same, without the implied suggestion there is only one real way to die with dignity.

Complete Article ↪HERE↩!

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Facing finality: it’s important to plan for your final days

A recent survey reveals that seniors and their adult children often do not take the necessary steps to plan for their final years of life.

By Cory Fisher

[D]espite the fact that most seniors have very specific ideas regarding how things should be handled when it comes to their care at the end of life, a surprising number have not shared this information with their offspring.

Too often seniors and adult children are eager to avoid the topic and therefore do not take the steps necessary to plan for the final years of life — including getting financial affairs in order and creating plans for care when a senior’s health inevitably begins to decline.

A new survey by Home Instead, Inc. found that while 73 percent of seniors have a written will, only 13 percent have actually made arrangements for long-term care. Additionally, 79 percent of seniors are more comfortable planning for their funerals than planning for when they need full-time care or hospice.

New research reveals it’s the children who feel the most awkward about broaching the subject of a parent’s final wishes. Even as parents approach their final years, adult children still find it hard to accept their parents’ mortality and believe the topic might be upsetting to parents or grandparents.

Yet once the subject has been broached, a 2017 survey of 505 seniors age 75 and over, and 510 adults between the ages of 45 and 69 revealed something quite different. A whopping 88 percent of seniors said discussing plans for their final years made them feel closer to their adult children, and 97 percent of adults who helped with their parents’ planning said it “gave them peace of mind that things would go okay.”

Those end-of-life fears that lead to avoidance only delay the inevitable. In most cases, adult children will be monitoring their parents’ care and the more information they have, the better.

Research, as well as Home Instead Senior Care experts say there are ways to combat those fears. Talk it out, don’t wait for a crisis, put a plan in place, consult experts on end-of-life issues and follow the “40-70 Rule,” which means that if you are at least 40, or your parents are at least 70, it’s time to start about certain senior topics.

Some of the most common fears experienced by seniors, according to research compiled by Home Instead, Inc., include:

  • Fear No. 1: “I hate the thought of having feeding tubes and ventilators keeping me alive.”

What you can do about it: Consider establishing a living will. Living wills detail an individual’s treatment preferences in the event he or she is unable to make those decisions. Many lawyers will prepare a living will as part of an estate planning package.

  • Fear No. 2: “I’m afraid I will end up in a nursing home, and I don’t want to die in a hospital or institution.”

What you can do about it: There are many options for end of life care outside of nursing homes and hospitals. Adult children can help their parents research home care options so the entire family is prepared when the time comes.

  • Fear No. 3: “What if I get dementia and can no longer make my own decisions?”

What you can do about it: It’s wise to have seniors designate a trusted person with power of attorney who will act on their behalf in the event that they are no longer able to advocate for themselves. This will give them peace of mind that their care wishes will be met regardless of their mental acuity.

For adult children, experts suggest the best way to address the end-of-life fears is to communicate clearly with parents about their wishes way in advance. Record specific discussions by taking notes, which could be helpful when making decisions in the future.

For those who feel a great deal of anxiety surrounding this topic, Home Instead offers free resources to encourage seniors and their adult children to talk together about important life plans, which can include end-of-life care, finances, insurance and funeral planning.

A novel component of the free resources offered includes a music generated feature entitled, “Compose Your Life Song.” The light-hearted online exercise, which can be found at http://www.caregiverstress.com/end-of-life-planning/compose-life-song/my-song/, can help families broach difficult subjects more easily.

After completing the activity, seniors are presented with their own customized “song” and accompanying resources that will help them reflect on their personal preparedness during their final years.

The song is a great way to gracefully transition into more serious topics, said Buck Shaw, owner of the Home Instead Senior Care office serving Sacramento, Nevada, Placer and El Dorado counties.

“It’s fun — I’ve done it myself,” he said. “It’s a very basic questionnaire that is a nice blend of topics. It’s so important to talk about these things — I can’t tell you how often I’ve seen families have disagreements when plans aren’t in place. One part of the family thinks grandpa wants one thing, while the other side thinks the opposite.

“It creates an awkward division of the family. I’ve even seen very educated people — doctors and teachers — arguing with relatives who are trying to keep grandpa alive when he was good to go. This can cause rifts in the family that are hard to repair.”

Participants who go online to create their own song respond “yes” or “no” to thought-provoking statements, such as, “I have checked off an item on my bucket list in the past year,” “I frequently visit with people whose company I enjoy,” “I have talked to my family about my end-of-life wishes” and “I have established a will and advanced directives.” This can open the door to deeper, more constructive conversations, said Shaw.

“About 77 percent of adult children think their parents have plans in place, while only 50 percent do,” he said. “In the long run, if we become advocates for seniors, we all win in the end. It’s all about raising awareness and doing the right thing.”

Complete Article ↪HERE↩!

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The ‘Outside Lands of Death’ is coming to SF

In just a few weeks, almost every corner of San Francisco will have death at its heel. The topic both universally experienced — and stigmatized — will be up for discussion in a variety of forms around the city.

A worker changes the Great American Music Hall’s marquee before You’re Alive, an event staged by You’re Going to Die, on Friday, Aug. 11, 2017, in San Francisco.

By Annie Vainshtein

[R]eimagine, a nonprofit sprouted from IDEO, is putting on the Bay Area’s first so-called “death event series.” More than 100 events, each hosted by an individual organizer, will be offered to the public beginning on April 16 up until April 22. The nonprofit expects 7,000 people who are still alive to attend.

The events will cover all the ways death alters our lives — from the pragmatic (working with physicians to get Advanced Directives straightened out) to the artistic (drinking from ceramic cups made using the ashes of 200 anonymous people) to the literary (the science around the use of psychedelics and death with Dr. Richard Miller).

There will be highly-mortal film screenings (including a talk with Lee Unkrich, director of “Coco”), comedy shows (Mortified: Let’s Talk about Death, Baby), and psychodrama taken to the next level (Dead for a Day: Attend your own funeral to “altar” your life). Actress Francis McDormand will also be at the Castro Theater on April 19. for a “Theatrical Exploration of Death, Dying and Suffering.”

Aside from the arts, the events will draw on the subjects of healthcare, design, and spirituality. Brad Wolfe, Executive Director and Founder of Reimagine, wanted the event series programming to be valuable for — and reflective of — as many people as possible.

The death-positive movement — which is broad enough to contain anything from Caitlin Doughty’s Ask a Mortician YouTube series to amateur banjo sessions about the beautiful uncertainty of our mortality — has valiantly taken on the challenge of eliminating a major stigma. But in some cases, it has also been critiqued for being white-centered, and glamorizing a topic that has never, and will never, for many communities of color, feel whimsical.

That concern is exactly what Reimagine’s founders kept in mind, in the pursuit of designing an event series that would be inclusive of people outside death talk’s main demographic: middle-class white people who have the luxury of mortal musings. One such event will be hosted by Dr. Jessica Zitter, a Critical and Palliative Care Specialist at Oakland’s Highland Hospital in conversation with Pastor Corey Kennard at Glide Memorial Church.

The talk will explore the wealth of research behind racial inequities in healthcare at the end of life, and discuss the divide between dying African-American patients and a healthcare system that falls short of providing the right kind of support.

Zitter wrote an insider’s perspective on the problems with the way the dying are treated in our current medical culture in her 2016 book, “Extreme Measures: Finding a Better Path to the End of Life.” The book has been lauded by the likes of BJ Miller, a UCSF doctor and triple amputee and Lucy Kalanithi, a Stanford doctor and the widow of a Stanford doctor whose memoir on dying from cancer was released posthumously.

Her conversation with Kennard will also touch on her anecdotal experience with an aspect of healthcare that’s untaught in the medical world: finding a common language with patients who are dying that’s beyond the withdrawn and overly sterile protocol.

In her practice, she said, she underestimated the role that things like prayer, miracles, and hope mean to her African-American patients, who, “come into a hospital in their darkest hours and are met with language and concepts that feel like in a way that they’re robbing of their humanity, robbing of their opportunities for being whole.”

It was only through the years she’d been working with Betty Clark, an African-American chaplain, that she began to notice the vital components of healthcare support for her patients of color that she’d overlooked.

“There are many, many areas I had wished to delegate to others that I felt were not part of my job that are absolutely part of my job.” Zitter said.”But I really have to say that it’s really powerful to [pray with my patients]. It’s not necessarily about God, but it’s about connecting to them, and supporting them.”

The second in her series of discussion with Kennard will take place at the Oakland Museum of California on April 17., and cover the intersections of faith and medicine at the end of life.

A full event schedule is available on Reimagine’s website. Some highlights are in the slideshow above.

Complete Article ↪HERE↩!

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How complementary therapies can positively impact end-of-life care

By Mary K. Spengler

One of the most common misconceptions about end-of-life care is that the focus is solely on pain management. While that is a key component of any hospice care program, many providers, including Hospice of Westchester, recognize the importance of a holistic approach to treating the patient, not just their symptoms. It is a proven fact that patients diagnosed with a life-limiting illness greatly benefit from alternative therapies, in addition to medical treatment.

Often called complementary care, these therapies can maximize patients’ comfort and peace of mind and provide relief for their primary caregivers.

Caring for the “whole” patient is an essential feature of hospice. Mind-body complementary therapies such as massage, reflexology, music therapy, art therapy and pet therapy can help ease tension, reduce anxiety levels and improve the overall comfort of the patient.

A good hospice provider should arrange for these therapies to be provided in the patient’s residence, whether that be their home, a hospital or a skilled nursing facility. Together, the patient, their family and hospice team decide which therapy would best address symptoms of pain, stress and anxiety.

We are proud to offer all of the above therapies, at no cost to our patients, through The Anna & Louis H. Shereff Complementary Care Program. While they all can be useful depending on a patient’s needs, here is a closer look at how massage therapy and reflexology can positively benefit hospice patients and their families.

MASSAGE THERAPY
It is widely accepted that power of touch can have a healing impact on pain and decrease stress. Massage is a form of structured therapeutic touch, which can relax patients, relieve muscle tension, reduce anxiety levels and blood pressure, boost the immune system and moisturize the skin.

Licensed massage therapist Maria MacIlvane first recognized the positive effect of touch years before she started her massage career. When her mother was on hospice care, MacIlvane was awed that simply rubbing her mother’s shoulders would instantly bring upon relaxation.

“I continued to massage her every day. It was so beneficial and I could not believe that just touching someone compassionately could affect the process they were going through so deeply,” MacIlvane said.

After the death of her husband in 2007, MacIlvane needed a change and wanted to pursue a career she was truly passionate about. She became a licensed massage therapist in 2010 and expanded her therapies to hospice patients three years ago.

MacIlvane said there are many benefits of massage therapy on patients diagnosed with a life-limiting illness, including helping with muscle tension, circulation and anxiety. She also works with patients’ family members to teach them what they can do in between sessions to help their loved one, and even gives them tips for acupressure that can help with their own anxiety and stress.

“When patients know that someone is with them, holding their hand and providing a compassionate touch, the effects are amazing,” MacIlvane said.

REFLEXOLOGY
Reflexology is based on the belief that specific areas of the feet and hands correspond with specific parts of the body. Gentle stimulation of these areas with the thumbs and fingers relieves stress and tension, improves circulation, promotes normal body function and results in a feeling of deep relaxation.

Gabrielle Zale, a nationally certified reflexologist, began working with hospice patients shortly after starting her career 17 years ago. However, her knowledge of how touch could help those with an illness started many years earlier. She remembered how people pulled away from her own mother when she was sick, as if they were afraid to touch her.

“No one should feel that alone,” Zale said. “Ultimately, touch is the greatest healer, particularly at this final journey in life. Even though some patients may not be awake and alert, by touching them in this way you are acknowledging that they are still there and still part of the world.”

Zale said that, even if a patient can’t speak, she is able to sense small body changes that show the effects of her practice. “It’s a subtle energy shift. Their breathing slows down — you can tell they are relaxing and may be feeling less pain and anxiety. They can tell that you are acknowledging them and are really present with them,” she said.

“This work is a really sacred thing for me. I’m not just holding another person in my hands, I’m holding their soul in many ways.” 

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A Sunny Day at the Death Cafe

What if talking about death didn’t have to be a downer?

By ALEXANDRA S. LEVINE

Good morning on this pleasant Tuesday.

[T]he last place you might think to spend a sparkling spring day is at a death cafe.

But that’s exactly what we did this month, and what we found, to our pleasant surprise, was anything but bleak.

On the second Tuesday of each month, the landmark Green-Wood Cemetery in Brooklyn hosts a “death cafe,” a salon-style gathering in which visitors can speak openly about death and mortality.

The death cafe movement, started in England in 2011, is now a global tradition taking place in coffee shops, offices and other unlikely spaces in dozens of countries. Its goal is to make conversations about dying — from the philosophical (is there an afterlife?) to the mundane (metal urn or marble?) — less taboo.

When we joined a recent death cafe at the cemetery, we expected an evening of tissues and tears with a group of New Yorkers in mourning.

The reality was quite the opposite.

We met a lively bunch of strangers, ranging from young adults to octogenarians, most of whom were not grieving at all; they had, instead, come for an intellectually stimulating, if at times uncomfortable, discussion.

“Death cafes are a kind of beautiful rehearsal for coming closer to death and understanding it and grappling with it, so that when we do have a death pending in our families, as is inevitable, we might be a little more prepared for it and slightly less rattled,” said the funeral director and death educator Amy Cunningham, who facilitated the get-together.

“There’s no agenda — nothing is sold or prompted — so it can go in all kinds of interesting directions in a totally natural way,” she said.

Between sugar cookies and laughs, our group jumped from religion to social media to psychotropic drugs to contemporary ethics.

“Can you be buried with your pet?” one woman, a documentary photographer, asked the group, following it up with a conversation on approaching death from a nonreligious perspective.

“How do you handle the loss of an estranged family member?” another wondered, prompting a third — who had lost a relative the week before — to speak about the death of her distant father.

She and her husband then debated the pros and cons of learning of a death through Facebook. Several minutes later, he told the group a separate story about the deathlike “static peace” he felt while tripping on the drug DMT.

(My contribution to the discussion: sharing how self-conscious I feel about what to say or do at funerals.)

“As frightening as it may seem,” Ms. Cunningham said that night, “there are many amazing things that can occur and ways to grow and carry grief through the next chapters of your life, and this is the way we evolve — through moments that seem so painful but then have hidden miracles of ecstasy.”

Green-Wood will host its next death cafe on April 10, and you can learn more through Death Café New York City or the Death Lab at Columbia University.

Complete Article ↪HERE↩!

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10 Questions to Consider When Preparing for the Death of a Loved One

By John O. McManus

Death represents a significant and vulnerable point in time for both the individual facing it and his or her loved ones. As part of its Educational Focus Series, McManus & Associates, a top-rated estate planning law firm celebrating more than 25 years of success, today identified “10 Questions to Consider When Preparing for the Passing of a Loved One.” During a conference call with clients, the firm’s Founding Principal and AV-rated Attorney John O. McManus offered guidance on how to ensure optimal end-of-life care for oneself and loved ones. To hear his recommendations, go to http://bit.ly/2COi3R1.

“Death is an uncomfortable topic for many people, but it should be accepted as a natural part of life,” commented McManus. “While everyone would prefer to focus on life, a significant amount of stress related to death can be reduced by proper planning.”

10 Questions to Consider When Preparing for the Passing of a Loved One

  1. Know one’s options: What is the difference between hospice and palliative care?

Both hospice and palliative care provide end-of-life care, including symptom management and comfort for an ill patient while he prepares for death. Both also offer end-of-life care in the home or in a facility and have a team of specialists who deliver this care. However, there are a few differences:

2. Dot your i’s and cross your t’s: Are all the necessary legal documents in order?  

While competent, one’s loved one should express her wishes to guide family members in the event she cannot make decisions for herself. This includes directions as to what type of care she wants; whether she would like to donate her organs and when that should be communicated to medical professionals; preferred end-of-life care (hospice or palliative care) and location. This can be included in a health care directive or in a separate letter to the family but should be done with a greater level of formality – such as with the help of an attorney – to communicate the legitimacy of the loved one’s wishes.

  1. Health care directive/proxy: In this document, the loved one will appoint a surrogate decision-maker or proxy to make medical decisions for her once she is no longer considered able to make competent decisions and provide informed consent. Without this in place, family members will not be able to make medical or care decisions for their loved one; they will have to go through the courts to attain permission. This process can be time-consuming and expensive, detracting from the care of the patient.
  2. Living will: This document tells family members and surrogate decision-makers whether the loved one would like to receive additional measures of care. This includes instructions for extraordinary measures such as respirators, resuscitation, antibiotics, and withholding or withdrawing life-sustaining treatment. This is also a good place for the patient to instruct whether she would like her organs donated after her death.
  3. Health Insurance Portability & Accountability Act (HIPAA): This document protects the privacy of the patient’s medical records and other information. This is especially important if the loved one is unable to make competent decisions, allowing family members to get second opinions and to transfer her between facilities.

3. Broach the subject: Has there been a discussion with the loved one to understand what his or her wishes are? 

Ultimately, the loved one should be in control of her death and family members should know what that means for her. When the time comes that she is no longer mentally competent to make her own decisions, her surrogate decision-maker will step in to be the voice of the patient. It is important for the surrogate decision-maker to keep in mind the patient’s wishes. This is by no means an easy conversation but can help bring peace of mind to the loved one knowing what a good death means to her is understood.

4. Nail down the timeline: When does the loved one want end-of-life care to begin? 

Studies have found that there are many people who put off end-of-life care. This is often because the patient is still fighting his illness and does not want to receive end-of-life care until he is done receiving preventative treatment. This can minimize the benefits of end-of-life care, as he has less time to prepare for death. To be eligible for hospice care, patients must be within their last six months of life. If the loved one is not yet done fighting his illness, hospice may not be the right decision. If he wants to continue receiving preventative treatment, palliative care may be the better option. It is important to note that when hospice care starts, the loved one will no longer see his regular doctors, and will only be under the care of the hospice staff. However, if a new treatment becomes available while the loved one is receiving hospice care, he can leave hospice to receive life-prolonging treatment.

5. Research reputation: Has one discovered all that can be discovered about the potential care facilities being considered?   

Not all facilities offer the same benefits. One should look at the reputation of each facility, and ask for references from them, in addition to looking up reviews online. One should also ensure that they provide quality care and do not have a history of promising services that were not delivered, and find answers to questions like, “Do they have a history of withholding pain medication from patients due to fear of addiction? Do they have a history of ethical or staff issues?” Additionally, one should ask when the last time the facility was inspected by the state or federal government, which should reveal if there were any issues. If there were, one should be sure that they were resolved.

6. Find out who is behind the mask: How well does one know the loved one’s care providers?  

Few medical professionals have explicit training in death and dying. Talking to the loved one’s doctor may help form a more personal relationship and make the loved one feel more comfortable. Learning about the communication habits between the doctor and her colleagues is extremely important; one should be assured that all staff coming and going knows what has been done before they arrived and why. Also, as mentioned above, when the goal of end-of-life care is to provide comfort, reports of staff withholding pain medication can be an important concern. Finally, some facilities use volunteer services who interact with patients and their families, and learning what screening and training they have had can bring peace of mind. 

7. Do due diligence: Has one done his or her own research? Have all factors that could influence one’s decision been explored?

Not all facilities are created equal. Hospice and palliative care have facilities across the nation; however, their standards vary. One should ask the facilities being considered for references. If anyone who has been in a similar situation is known, one should ask him or her how he or she was treated by the particular facility’s staff and if they followed through with their promises. Also, one should ask care providers to share what can be done by the patient’s loved ones to help. Most importantly, one should ensure that he or she is well-informed on the ethical issues in this area of care.

8. Learn the ins and outs: Is in-patient or out-patient care best for the loved one and family?

The physical location for end-of-life care is a significant decision for the loved one. It is important that she feels comfortable in her environment during the final days of her life. Unfortunately, this is not always possible to achieve, since some families may not be physically equipped to care for their loved ones at home (out-patient care) and some are not financially able to allow their loved ones to stay in a facility (in-patient care).

9. Prepare Plan B: Does one have a backup plan?  

This may be most important for those who have decided to use out-patient care. Despite what promises are made by the end-of-life care provider, families should always have a backup plan. Recently, stories in the media have drawn attention to negative hospice and palliative care experiences. The reasons have ranged from poor communication to organizations not delivering on their promises. A common complaint is that staff does not treat the needs of patients who are in pain as time-sensitive, and the loved one’s doctors and nurses were unreachable. For situations such as these, it is important to have an alternative.

One option that many have found helpful is to have a comfort kit, which includes two pain relievers that can be administered to the loved one, should he be in pain when help is unable to come in a timely manner. One should ask for a comfort kit from the loved one’s care providers and shown how to properly administer the medication to the loved one.

10. Ask for help: Could the loved one and his or her family benefit from counseling?

Death is a highly stressful process for the person who is dying and her friends and family. It is extremely important for all parties to feel informed about what they are undergoing. The loved one should be able to reach a point of finitude, coming to grips with eventual death – this is a long process that can occur on many levels. On a surface level, this can begin with preparing any necessary legal documents, and on a deeper level, this can include reminiscing, enjoying positive moments, saying goodbyes, passing on sentimental items of significance, and legitimizing her life how she sees fit.  This should not solely be left for the loved one to realize on her own. When faced with a terminal diagnosis and death, people have many different reactions. It is important to offer the loved one guidance during this time. This will allow the loved one to have a death filled with control, dignity, peace, and finitude.

While this process has an end for the loved one, the family members must continue to live their lives. Rituals after death such as religious traditions, a funeral and/or a memorial service can be helpful, serving as a distraction and time to celebrate the loved one. However, at the end of this ritual period, family members will no longer have any distraction from their grief and may need guidance. It is important for those left behind to understand healthy coping techniques and the stages of grief they are experiencing.

“It is important to talk about death with loved ones – there are emotional benefits to reflecting on a life spent together, and expressing gratitude and admiration,” explained McManus. “It is also crucial to ask difficult questions so that the topic receives adequate attention and preparation

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