[W]hen I talk to people with Medicare about planning for the end of their lives, the statistic that always strikes me is this:
If you ask people if they’d rather die in a hospital or at home, 75 percent say at home. But when you look at what actually happens, only 25 percent of people get to die at home, while 75 percent pass away in hospitals.
The only way you can ensure that your doctor understands your wishes is by talking about them. And now, Medicare will reimburse your doctor for that conversation.
This is called advance-care planning. It’s designed to help people with Medicare learn about various options for end-of-life care; determine which types of care best fit their personal wishes; and share their wishes with their family, friends, and physicians.
One option you can discuss with your doctor is hospice care in their home. Hospice doesn’t focus on curing disease and it’s not only for people with cancer.
Medicare’s hospice benefit covers your care, and you shouldn’t have to go outside of hospice to get care except in rare situations. Once you choose it, your hospice benefit should cover everything you need.
If you qualify for hospice care, you and your family will work with your hospice provider to set up a plan of care that meets your needs.
You and your family members are the most important part of your medical team. Your team can also include doctors, nurses or nurse practitioners, social workers, physical and occupational therapists, speech-language pathologists, hospice aides, homemakers, and volunteers.
A hospice nurse and doctor are on-call 24 hours a day, 7 days a week to give you and your family support and care when you need it. You can also include your regular doctor or a nurse practitioner on your medical team to supervise your care.
To find a hospice provider, talk to your doctor or call your state hospice organization. The National Hospice and Palliative Care Organization has a website that allows you to look up local providers based on your zip code, at nhpco.org/find-hospice.
You can get hospice care if you have Medicare Part A (hospital insurance) and you meet these conditions:
Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill, with a life expectancy of 6 months or less;
You accept palliative care (for comfort) instead of care to cure your illness;
You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
You have the right to stop hospice at any time. If you do so, you’ll go back to the type of Medicare coverage you had before you chose a hospice provider.
Depending on your illness and related conditions, the plan of care your hospice team creates can include doctor and nursing services, medical equipment and supplies, prescription drugs, hospice aide and homemaker services, physical and occupational therapy, speech-language pathology services, social worker services, dietary counseling, grief and loss counseling for you and your family, short-term inpatient care for pain and symptom management, and more.
Mary De Freze, 81, has heart problems, chronic lung disease and a history of falling. At the end of her life, De Freze said, “I don’t want to be in a lot of pain and I don’t want to be kept alive by machines.” Stonebrook Healthcare Center staff helped her put those wishes on a Physician Orders for Life-Sustaining Treatment form. An effort is underway to create an electronic registry of the forms so emergency responders can quickly access them regardless of where patients are.
Mary De Freze, who has heart problems, chronic lung disease and a history of falling, knows she may not have too many years left. And she’s clear about what she wants — and doesn’t want — at the end of her life.
“I don’t want to be in a lot of pain and I don’t want to be kept alive by machines,” said De Freze, 81.
After a recent fall landed De Freze in Stonebrook Healthcare Center with cracked ribs and a bruised spleen, the staff there helped her put those wishes on paper.
The document they used, Physician Orders for Life-Sustaining Treatment, or POLST, gives patients a choice of how much medical care they want in an emergency.
Prompted by a state law that took effect this year, a coalition of emergency and social service providers is working to create an electronic registry for POLST forms so they will be available to first responders and medical providers when they are needed. The group is starting with a three-year pilot project in San Diego and Contra Costa counties that could serve as a model for a single, statewide registry. Paper-based POLST forms are used across the nation, but electronic registries exist only in a few states, including Oregon, New York and West Virginia.
Many adults have advance directives, which are legal documents that designate a surrogate decision-maker and list patients’ health care preferences. POLST forms go further, creating a set of medical orders that are signed by the provider and the patient or a legally recognized decision-maker. Unlike advance directives, they are specifically designed for people who are already seriously ill or near the end of life.
Research shows that POLST forms help ensure patients’ end-of-life wishes are followed. But that only happens if doctors and other emergency providers can get them quickly. In California, the POLST form is a paper document and might not be at hand when patients need it. In many situations — a heart attack, a stroke or severe dementia — patients may not be able to communicate. And doctors may not be able to reach their families right away.
FOLLOWING WISHES
Without information on what patients want, there is an increased chance their wishes won’t be followed.
“If you take the time to fill out a POLST form, you want your health care wishes to be known and respected,” said Kate O’Malley, a senior program officer at the California Health Care Foundation, which is funding the pilot project in California.
A POLST registry “would be a big plus for being able to give people the care they want and not give them the care they don’t want,” said Jeffrey Klingman, a neurologist at Kaiser Permanente in the East Bay.
“I don’t want to do things to people they don’t want done,” he said. “On the other hand, I don’t want to delay treatment while I wait to figure out what they want done.”
Oregon was the first state to use POLST forms in 1991. California has been using them for nearly 20 years. Filling out the forms is voluntary, but once they are completed and signed, they must be followed, and providers have immunity from criminal prosecution or civil liability when they do so in good faith. The forms are printed on bright pink paper and include decisions such as whether a patient should be resuscitated, admitted to the intensive care unit or have a feeding tube inserted.
Tony Chicotel, a staff attorney at California Advocates for Nursing Home Reform in San Francisco, said patients should document their wishes in advance but that there are some downsides to doing so only with POLST forms. They are not nearly as thorough as advance directives and don’t allow you to designate a decision-maker, he noted. “The most comprehensive health care planning you can do is to name an agent.”
In addition, Chicotel said many nursing home residents are being urged to complete POLST forms even if they aren’t seriously ill or at the end of life. He said if an electronic registry is created, it should also include advance health care directives.
California’s electronic registry would be a secure, cloud-based portal for medical providers to submit and view POLST forms, regardless of whether the patient was at home, in the hospital or at a nursing home.
A ‘NO BRAINER’
An electronic registry is a “no-brainer,” said Judy Thomas, CEO of the Coalition for Compassionate Care of California, which coordinates the state’s POLST program. But implementation will be much harder because it will require the cooperation of state agencies, doctors, emergency personnel, and private and public health systems. Success will also depend in part on hospitals’ willingness to share records.
“We are not asking all health systems to share all information,” said Allen Namath, co-founder of Vynca, the technology vendor for the project. “But the value in these forms is being able to share them.”
Patients who go through the trouble of documenting their medical preferences shouldn’t have to worry about getting the wrong care, he said. “It is not a cardiology problem. It is not a cancer problem. Helping improve our end-of-life care … applies to everybody.”
San Diego County already has a health information exchange that allows hospitals and health systems to share some data. But Contra Costa County is further behind.
“It’s going to be challenging,” said Donald Waters, executive director of the Alameda-Contra Costa Medical Association, which is helping lead the pilot project.
But Waters said it’s worth the effort to overcome the hurdles because having documents uploaded means paramedics and others will know in an instant if patients want to be resuscitated or just kept comfortable.
Situations arise every day in which being able to access POLST forms electronically could improve end-of-life care, said Tom Sugarman, an emergency physician at Sutter Delta Medical Center in Antioch.
“If you come [to the hospital] in full cardiac arrest … we only have one or two minutes to make a decision,” said Sugarman, who educates doctors about POLST. “All physicians are going to err on the side of preserving life.”
Sometimes, however, a patient may prefer comfort care, Sugarman said. A POLST form — if it is available — means families don’t have to make decisions during an emergency, he said. “The worst time to have that conversation is during a crisis.”
FORMS CLOSE BY
At Chaparral House, a nursing home in Berkeley, the POLST forms are in the residents’ folders at the nursing station. The forms go with patients to the hospital, but sometimes there is still a disconnect. Administrator KJ Page recalls one resident getting a feeding tube when he didn’t want one and another who almost underwent bypass surgery against his wishes.
Audrey de Jesus, 83, arrived at Chaparral House just a few months ago. She uses a wheelchair and an oxygen tank. Beside her bed sits a Bible and a book of Psalms.
De Jesus has seven children and said the form tells them exactly what she wants — comfort-focused treatment — so there aren’t any questions in an emergency. “I want pain control and the least suffering for my family,” she said.
Stonebrook Healthcare Center Social Services Director Shirley Jackson said filling out POLST forms is part of the admission process. “It’s almost like a driver’s license for the end of your life,” she said. “It’s important.”
Having the form available electronically would make it much easier for everyone. “If, God forbid, you have to send somebody out in an emergency, especially if they are unresponsive, it’s right there in the chart,” she said.
De Freze, a former certified nursing assistant, said she plans to put her pink form on her refrigerator when she leaves Stonebrook. She knows she could have an emergency and may not be able to tell doctors or paramedics what she wants.
“You can’t communicate if you are in excruciating pain,” she said.
On Wednesday the Rev. Nancy Butler of Riverside Family Church in Hartford died voluntarily. For two years she had been suffering the debilitating effects of ALS even as she continued to pastor the evangelical church she established in 2008 as “theologically open minded, diverse, empowering women and affirming of LGBT people.”
The letter she wrote to her flock last week begins:
I have decided to go off my feeding tube and vent this week and . . . how should I put it . . . die. I knew my suffering would reach this tipping point and caring for me would become impossibly demanding. What I didn’t know was whether or not God would want me to suck it up for some unseen purpose or end my life this way.
I am a little surprised God is confirming this decision. Nice to know He isn’t a sadist. He is oh so tender right now. He tells me my work is done and it’s the right time to come home.
Having a feeding tube removed does not legally count as assisted suicide, but we shouldn’t be fooled by the passive voice. Someone took the tube out, very likely a medical professional. Nancy Butler died of her own will, with assistance.
So did my mother Bernice, who consulted with her internist before deciding to stop eating and drinking six years ago. She was facing a painful death from peritoneal cancer and chose instead to end her life voluntarily. That was not, technically, assisted suicide either.
Assisted suicide is defined as “knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.”
Most Americans have no problem with that, so long as the person is facing a painful terminal disease. Indeed, according to a new study from LifeWay Research, fully two-thirds of them find it morally acceptable.
To be sure, a moral distinction can be drawn between providing a person with a lethal drug and withholding or withdrawing treatment or sustenance. But it’s a distinction without a difference, as far as most are concerned.
The moral issue, it seems, is not how death comes about but whether the terminally ill get to choose. The answer, increasingly, is yes. That goes for 70 percent of American Catholics, whose church has worked hard and with some success to prevent state approval of assisted suicide laws.
“The concept of physician-assisted suicide is a major affront to the teachings of the church,” Michael C. Culhane, executive director of the Connecticut Catholic conference, said last year.
But as a matter of public policy, the argument ought to be prudential. Will terminally ill persons be hustled into the next world without their really wanting to be?
The best empirical evidence we have in the U.S. comes from Oregon, where assisted suicide became legal in 1998. Since then, the annual number of legally sanctioned suicides has risen from 16 to 132, with a doubling since 2010.
That’s under four percent of Oregonians who died last year. Of them, 77 percent were dying of malignant cancers and 9 percent had ALS — as has been the case throughout the history of assisted suicide in the state.
I know that my mother chose what she wanted, and I’m confident that Nancy Butler did too. I’m with most other Americans in not wanting to stand in the way of those terminally ill persons who choose to do the same by way of lethal prescription. I cannot speak for God.
“Grieving an animal member of the family is likely to have many of the same features as grieving for a human member of the family,” says Jeannine Moga, a veterinary social worker specializing in human-animal relationships and grief counseling at the NC State Veterinary Hospital (VH). “We grieve deeply loving relationships, no matter what the species.”
Animals are involved in much of our daily routines — and have a special place in holiday celebrations and rituals. Sometimes, says Moga, our pets spend more time with us — and in our most private spaces — than people do.
“When this is the case, we may grieve their absence more deeply than other losses — and we will be acutely aware of who is missing,” says Moga.
But there are ways to cope. Here, Moga, who directs the Family and Community Services program at the VH, part of the College of Veterinary Medicine (CVM), offers suggested coping techniques as we enter the holiday season:
‘But I don’t want to celebrate…’
Grievers may find their feelings swinging wildly from moment to moment, day to day. It is normal to feel empty, lonely, angry, sad, exhausted and depressed – even when everyone else around you is full of joy and energy. Accept your feelings as they are, but remember that it is also OK to take a break from your grief. “Grief breaks” can actually help you to heal from your loss.
Choose your commitments carefully. Be honest with what you do — and do not — have the energy to manage and be cautious about overdoing holiday gatherings.
Avoid the urge to isolate yourself. Humans are social creatures by design. Connecting with others, particularly those who know and love you, is an important part of recovering from significant loss.
Accept your limitations. Grief is a full-body experience that demands stamina and courage, as well as a high degree of self-care. Set limits about how you will spend your free time and give yourself an exit strategy when social contact becomes overwhelming.
Finding restoration: A holiday gift to yourself
Take care of your body so your heart can heal.
Remember to eat nourishing food, get ample rest, move your body and drink plenty of water to replace the water lost through tears. Also make time for quiet reflection. Journaling, reading, prayer and mindful movement provide us with respite from the demands of both grief and the busy holiday season.
It is also important to ask for support from trusted friends and family when you need a boost or a listening ear.
Maintain connections
Grief is not about saying goodbye – it is about finding a way to relate to our departed loved ones in a different way.
Finding ways to honor and remember them, both during the holidays and all year long, allows us to maintain that connection and find comfort in their legacy. Some grievers find solace in maintaining or adapting holiday rituals to acknowledge those who have died.
For instance, lighting a candle for a deceased pet or putting at extra star at the top of the holiday tree may help us find space for those we miss. Others find it meaningful to make a donation in the honor of a beloved pet or help animals in need of love and support.
Acting with compassion is one of the most effective ways to balance out the heaviness of grief. Maintaining a connection to the true meaning of the season can also bring consolation at a time of grief. Across most cultures and faiths, this is a time for reflection, gratitude, hope and love.
When we bring to mind the blessings that come with the human-animal bond, it becomes easier to find meaning and hope during the holidays.
Care for dying children must take full account of the emotional and practical needs of their family as well as the young person, according to new guidance from the National Institute for Health and Care Excellence.
The challenges of improving productivity and quality, while also saving money, will prompt massive change in the hospital sector
The guideline, published today, also recommended an “advance care plan” detailing treatment decisions that should be routinely updated and that should include information about whether the child wants to donate their organs.
Children approaching the end of their life, as well as families and carers, may find it distressing to discuss the plan, noted the guidance. It added that they might, therefore, be reluctant to speak about it and may also have differences of opinion over what decisions are recorded in it.
Parent and carers must also be talked to about the support they can expect when the child dies as part of developing the plan, stated the document.
The guideline makes recommendations about how to discuss treatment withdrawal, and what can be done to help families when a child is approaching the end of life, such as preparing for important rituals, having photographs and any considerations around the use of social media.
It also covers how to discuss the preferred place of death for the child, how to manage pain in children, possible seizures, respiratory distress and nutrition.
A specialist paediatric palliative care team should be involved in managing distressing symptoms and must include, at a minimum, a paediatric palliative care consultant, a nurse with expertise in paediatric palliative care, a pharmacist with the same level of expertise, and also professionals who have experience in supporting families and children with practical and social elements of their care.
In addition, information on how to recognise whether a child is in the last few days of their life, about rapid transfer arrangements to their preferred place of death and how to provide care at home is discussed in the guidane.
However, it called for more research about how to identity when a child with a life-limiting condition is likely to die within hours or days.
“To help predict when a child or young person is in the last hours or days of life, a clearer understanding is needed of which groups of signs and symptoms indicate this most clearly, it said.
“This would improve healthcare planning, but importantly would also allow families to realistically address their ‘hopes and wishes’ for their child’s care while preparing themselves for the child’s or young person’s last hours and days of life,” it added.
The guidance also stated that clear, easy to explain information tailored to the child’s age and level of understanding should be provided to them. This could include using art, digital media or music to explore their feelings and questions.
Dr David Vickers, consultant paediatrician at Cambridgeshire Community Services NHS Trust and chair of the NICE guideline committee said: “Providing care for a dying child can be an enormous challenge. It can place a substantial strain on the family.
“Mothers and fathers can be forced into a medical role in order to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure,” he said.
“By getting this right, and being there for whoever needs us, wherever they need us, we can ensure siblings continue to be a brother or sister, and parents can have time to simply be mum and dad,” he added.
Heidi Anderson, with her Nan and brother, has been thinking about life after death.
[O]n the 16th of August this year, my beautiful 96 year-old Nan passed away. Since then, I have rode one hell of a roller-coaster with my emotions all over the shop.
Nan and I always had a pact that if there were something on the other side, that she would come back and tell me about it.
She never believed there was anything else after you die and she would always say to me: “Once you’re dead, you’re dead. That’s it. There is nothing else.”
That is what terrifies me. The thought of “that’s it” petrifies me. I’m seriously scared of dying and for years this has given me anxiety.
I have worked with my psychologist about this fear. Dying is inevitable, but I still find it so hard to comprehend.
I’m not sure any of the sessions have helped, I still think about it a lot.
People constantly say to me: “Why stress about something you have no control of?”
Or, “You won’t know when you’re dead that you’re dead, so chill out.”
Heidi Anderson’s Nan, who passed away in August age 96.
Believe me, if I could switch it off I would but that’s easier said than done. It’s not the thought of how I die that bothers or upsets me, it’s the thought of the unknown. Not knowing what’s next.
This consumes my thoughts far too often and it’s something that I have tried to come to terms with over the past few years with no such luck.
When my Mum told me that Nan was dying and she wouldn’t recover from her fall, I flew straight to her bedside, along with all the family.
Saying goodbye to my Nan was the hardest thing I have ever had to do in my life.
Once Nan knew herself that she was dying and had accepted her fate, she called me into her room to speak. At this stage, she didn’t have much energy but she was putting all her fight into saying goodbye to people individually.
“Heidi, we all die. That’s life,” she said to me. “That’s the one thing are guaranteed in life. We’re born to die.”
Looking back, I think Nan was speaking to herself, as she too was always so afraid of death.
Over the next few days, Nan went downhill and eventually she stopped speaking and just slept.
Family came and went and said their goodbyes, but I stayed around.
I wanted to be with Nan as she exited this world. I wanted to hold her hand as she took her last breath.
Looking back, I think I also wanted to confront my fear of death. If I saw what actually happens, maybe I wouldn’t be so scared.
So I hung around the hospital like a bad smell, rarely leaving Nan’s bedside.
I played her music, told her stories and relived all our good times.
Unfortunately, by that stage she was no longer talking, but she would twitch her lips or flicker her eyes.
I swear she could hear everything, she just couldn’t respond.
In the end, I flew home to Perth. She was holding on and I felt Nan just didn’t want to die in front of any of her grandkids.
12 hours after I got home, Nan took her last breath with her three daughters at her side.
The nurses at the hospital said it was very common for people, when they’re dying, to choose who is with them.
Although I wanted so desperately to be with Nan, I felt she knew it was best that I wasn’t there.
When I arrived home in Bathurst for her funeral, I still felt that I wanted to confront my fear of death and see Nan.
Mum took me to the funeral home the morning of her farewell and I saw Nan for the first time since she passed away.
She was dead and she even looked it. No amount of makeup was hiding the fact that she was gone.
It hit me like a ton of bricks. Nan was dead and she was never coming back.
Thoughts started flooding my brain.
“Where is she? Is there something else out there? Is she with Pop? What happens? Where has she gone?”
Her body was there but that wasn’t my Nan.
My friends asked later if she looked peaceful and I found that hard to explain. She looked like she was gone and that is something I won’t ever really understand.
I’m not sure seeing my Nan in her coffin has helped my fear of dying, but it definitely gave me some kind of closure.
I am still waiting for Nan’s spirit to visit me and let me know if there is anything else out there.
I have had a couple of dreams about her and I talk to her all the time but I am yet to feel her or hear if there is life after death.
