Getting our Wishes: Choices at the End of Life
By Richard H Bernstein, MD, FACP
Delivered at the Ethical Culture Society of Bergen County, 3/28/15
Leon Kass, a University of Chicago ethicist stated: If medicine takes aim at death prevention, rather than at health and relief of suffering, if it regards every death as premature, as a failure of today’s medicine– but avoidable by tomorrow’s– then it is tacitly asserting that its true goal is bodily immortality…Physicians should try to keep their eyes on the main business, restoring and correcting what can be corrected and restored, always acknowledging that death will …and must come, that health is a mortal good, and that as embodied beings we are fragile beings that must stop sooner or later… medicine or no medicine.
Like Bette Davis says, growing old is not for sissies. I would add that dying with dignity and having a “good death” is also not for sissies. It will take effort for most of us.
The effort I refer to is the subject of today’s Platform.
By good death I mean one with little or no suffering and which occurs in a manner consistent with our values and wishes.
In the open words, as Kass implies, the underlying context for today’s platform is the unfortunate failure of the medical profession to adequately address and mitigate suffering from serious and life-limiting illness.
After documenting this failure, I will turn to how we can improve our chances of a death with dignity and comfort by knowing the pros/cons of the various options we have.
Next, I will discuss what preparations we should make now to improve the chances of having a good death
Finally, I will refer to resources we should be aware of if additional help is needed to achieve the end of life (EOL) wishes for ourselves, family and friends.
The Current Failure to Prevent Suffering
It’s been more than 15 years since the Institute of Medicine released its seminal 1997 report detailing the suffering many Americans experience at the end of life and offering sweeping recommendations on how to improve care.
Since then, we’ve seen dramatic scientific advances, new therapies and better trained doctors, so OF COURSE we would expect EOL care would be improving.
Indeed, guidelines and quality measures for end-of-life care were developed, the number of palliative care programs rose and hospice use doubled between 2000 and 2009.
But has dying in America gotten any less painful?
The answer seems to be a resounding NO. The number of Americans experiencing pain in the last year of life actually increased by nearly 12 percent between 1998 and 2010. In addition, depression in the last year of life increased by more than 26 percent.
There was no impact on each of these key outcome measures:
- Earlier writing of DNR orders
- Physicians knowledge of their patients’ preferences for CPR
- Number of days spent in an ICU before death
- Patient reports of moderate or severe pain
- Use of hospital resources
Ironically, it may be that the greater range of high-tech treatments, which lengthen the process of dying without curing the patient, that is producing unintended consequences.
Mary Shelley and others have warned us about the downside of technology.
One observer noted: When we throw more medical treatment at patients who are on their way to dying, these “advances” keeps them in a difficult situation for much, much longer.
More people are put on ventilators and kept in hospitals.
The seduction of technology has at times created a Frankenstein that has had a toll on the quality of life at the end of life.
When the marginal benefit of aggressive treatment is minimal or none, studies have shown that opting for more therapy vs. comfort care alone will reduce both the quality of life AND the length of life.
Most clinical research focuses on wiping out diseases, rather than long-term supports or symptom management for people with chronic conditions or disabilities associated with aging.
Most physicians tend to under-treat pain and other symptoms at the end of life because they don’t recognize them or are hesitant to talk candidly about the process of dying and the pain associated with it.
Many practitioners aren’t honest and fail to empower patients with the truth.
In treating the seriously ill, it’s easier to continue to do procedures and diagnostic tests rather than having that conversation, which is very honest and very difficult.
Take a cancer patient in which an oncologist might recognize the person is going to die. Rather than telling him or her, the doctor begins another round of treatment that causes more pain and suffering, even while sincerely hoping this next step will help.
And so the overuse of aggressive treatments continues to do things to people at the end of life despite having no benefit.
At times, we don’t seem to have the vernacular in our society to have the conversation about the end of life. People say, “I don’t want to take away someone’s hope.” But in a metastatic aggressive cancer, we have to redefine what we mean by hope and reset goals.
Often, those conversations aren’t happening until the last days or hours of life.
Although the hospice benefit is for those with a prognosis of 6 months, half of all hospice patients receive hospice care for less than 30 days. Earlier referral could mean pain and symptoms control for a much longer and sustained period of time.
We are all going to pass through a part of our lives where we must weigh the benefits and burdens of various options. We certainly have a strong interest in its not being awful. So how do we increase the chance of having the last phase of our life meet our expectations and those of our loved ones?
When asked: What do Patients Want? They say:
- Pain and symptom control
- Avoid inappropriate prolongation of the dying process
- Achieve a sense of control
- Relieve burdens on family
- Strengthen relationships with loved ones
When asked: What Do Family Caregivers Want?
- To have loved one’s wishes honored
- To be included in decision processes
- To receive support and assistance at home
- To obtain practical help (transportation, medicines, equipment)
- To have personal care needs met (bathing, feeding, toileting)
- To receive honest information
- And to have 24/7 access
How Well Do Medical Professionals Meet Expectations?
Studies suggest that clinicians typically elicit fewer than half of patients’ concerns and consistently fail to discuss patients’ values, goals of care, and treatment decisions. Given the gap between our wishes for EOL care, the difficulty the medical profession has in dealing with the challenging communication needs near the EOL, and the persistent pattern of not following our advance directives, what can we do?
Let’s first turn to the legislative sphere where there has been much activity nationally and even in New Jersey. Next we will consider what steps we can personally take outside of the political arena.
Medical aid-in-dying has been approved in Oregon (the first state where it became legal in 1997) and the states of Washington, Vermont, New Mexico, and Montana.
Many More States Consider ‘Death With Dignity’ Laws, including NJ
Assembly Bill 3328, introduced by Representative John Burzichelli, would send a law emulating the Oregon and Washington’s Death with Dignity Acts to the voters of New Jersey.
The Senate version is sponsored by Senate President Stephen M. Sweeney and Nicholas P. Scutari. Death-with-Dignity legislation is quickly moving through the New Jersey legislature and could be sent to the Governor in a few months.
What does the legislation propose?
The bill would allow terminally ill New Jersey adults who have been diagnosed as having six months or less to live to obtain medication they can self-administer to end their life. They would have to make two oral requests for the drugs to their attending physician, at least 15 days apart, and a written request.
A consulting physician would also have to sign off, and the request would require a witness who isn’t a relative and isn’t entitled to any portion of the patient’s estate.
Christie’s response to this so far. “I have grave concerns about it.” But he may consider it after it is passed.
63 % of New Jersey residents support death with dignity, the Aid in Dying for the Terminally Ill Act
Editorials in the Times of Trenton, the Star Ledger and the The [Cherry Hill] Courier Post all endorsed the legislation.
But are we almost there? Is that all we need, a Death with Dignity Act in NJ?
To understand the broader context and limitation of this kind of legislation, let’s look at it as just one of many types of EOL options.
Let’s review some important terms when discussing EOL options:
- Active euthanasia
- Active euthanasia occurs when a medical professional, or another person, deliberately does something causing a person to die with the intention to end suffering. When done voluntarily, with an individual’s consent and with certain identified safeguards and limits, this is legal in the Netherlands, Belgium, and Luxembourg.
Usually involves an injection of various sedatives and muscle relaxants.
Death occurs within minutes.
Active euthanasia is NOT legal in the US unless you are a veterinarian (“Putting our dying pet to sleep” is active euthanasia).
- Passive euthanasia
- Passive euthanasia occurs when a patient dies because medical professionals either don’t do something necessary to keep the person alive or stop doing something that is keeping the person alive. Examples:
switching off life-support machines
disconnecting a feeding tube
Not carrying out a life-extending operation
Not giving life-extending drugs
- The Death with Dignity (DwD) movement
- The Death with Dignity (DwD) movement, as we see in the legislation, rebrands physician assisted suicide and Physician aid in dying.
With DwD legislation, the intention is to provide a legal means to end suffering and voluntarily end life. It requires certain restrictions and conditions before a doctor can prescribe but not directly administer medication, as in Active Euthanasia.
The Hemlock Society, now called Compassion and Choices, has a presence in most states and is an active advocate for DwD legislation. It no longer sells books on how to quickly end your life using various Kevorkian type devices or hoods to suffocate after inhaling certain gases following ingesting a cache of sedatives.
It now supports a website and a range of free counseling services to patients and physicians that can be very helpful to implement the DwD approach to EOL care.
One problem with the physician aid-in-dying legislation is that it doesn’t address the needs of someone with advanced dementia.
This was seen in the current Oscar winning movie, Still Alice, starring Julianne Moore. She had accumulated the needed medications and wrote down specific instructions to take the medication herself, but her illness interfered with her executing the plan by the time she wanted to.
DwD may also not be helpful for individuals with spinal injury, degenerative neurologic disease and Parkinson’s disease who have the loss of arm and hand control.
Could family or friends help administer the sedatives? Sure. Is it illegal and subject to prosecution to help someone end their life? Definitely. This is why I think we need to be aware of several other alternatives.
- Palliative care
- Many EOL care experts feel euthanasia and even the physician aid-in-dying are virtually unnecessary if good palliative care (comfort care) and hospice are available.
Palliative Care begins by eliciting someone’s goals of care and their EOL care preferences. Is it to continue aggressive therapy with minimal discomfort, fine, as long as these are achievable?
If the goals represent a false hope and a futile attempt to try yet one more therapy whose burdens and likely complications will not help maintain an acceptable quality of life, then a frank but sympathetic discussion is needed.
We can think of Pall Care as focusing on maintaining the highest quality of life and meeting one’s goals in the face of a serious and potentially life-limiting condition.
Palliative care doctors and nurse practitioners provide expertise to address pain, shortness of breath, seizures, and other sources of physical suffering.
But Palliative Care teams, which include nurses, social workers and pastoral counselors, also address emotional distress, financial issues and caretaker needs and so-called spiritual or existential concerns.
The latter involve distress people may have over the meaninglessness of their life, unfinished business with loved ones and guilt over past behavior that hurt others.
In more extreme cases, physical symptom control requires progressive degrees of sedation along with pain control.
In the most extreme cases, patient will be sedated to the point where they are no longer able to communicate, eat or drink and eventually pass away in 10 days or less, unless the person had stipulated in an advance directive he or she wanted artificial nutrition, hydration and respiratory or other life sustaining therapy.
Palliative sedation is legal in the US and even permissible under the Catholic Church’s principle of the double effect, first formulated by St Thomas in the 13th Century.
The double effect concept is that if the intention is to do good, i.e., relieve suffering and help, but the treatment has the side effect of speeding death, it is morally justified.
But we could ask, is this kind of sedation just another form of active euthanasia and isn’t the intention “of relieving suffering” simply a justification for bringing about a more rapid death to end that suffering?
The ethics here are fascinating and will continue to be debated, but note that the spectrum of palliative care interventions provides important alternative to the physician aid in dying approach and other forms of euthanasia.
- Withholding nutrition and hydration and other life sustaining therapy
- A fifth EOL care option involves a self-directed form of passive euthanasia: withholding nutrition and hydration and other life sustaining therapy.
Some very determined individuals have stopped eating and drinking voluntarily to bring about their own death. This slow form of suicide can be made more tolerable by the judicious use of ice chips, mouth and lip care until hunger subsides and the person slowly lapses into sleeping more and more of the time until they die.
More commonly, people with terminal illness naturally lose their appetite and desire to drink fluids. Forcing fluids and food will prolong dying, but many people stipulate they don’t want any form of artificial or forced nutrition and hydration. They will typically pass away in 10 days or fewer.
Other life sustaining therapies include:
- Mechanical ventilation
- Blood transfusions, blood products
- Future hospital, ICU admissions
Allowing or not allowing these should be stipulated in one’s Advance Directive or Living Will, which we’ll discuss next.
Getting our wishes about therapy and care at the EOL requires preparation.
The most common forms of advance care planning involve a legal Advance Directive or Living Will and designation of a health care proxy, sometimes called a power of attorney for health care.
Both of these come with caveats.
Ever since Congress passed the Patient Self-Determination Act in 1990, health professionals and consumer advocates have urged Americans, especially older adults, to draw up advance directives and distribute them to families and doctors.
The campaign does seem to have paid off in one sense:
Among Americans over age 60, the proportion who had advance directives when they died rose from 47 to 72 % in a 2010 in the national Health and Retirement Study.
Too often, though, an advance directive hardly seems to matter. Documents are misplaced, stashed in safe deposit boxes, filed in lawyers’ offices and never gets to the right place in time when a decision needs to be made.
Sometimes hope trumps documentation, as when a directive prohibiting life-sustaining measures is over-ridden if the proxy assents to feeding tubes, after a physician encourages to “just to see if it would help.”
But advance directives also fail because they are not medical orders. Their vague or outmoded language — When is a condition “terminal”? How long must a “persistent vegetative state” last? — doesn’t tell physicians exactly how to proceed.
Moreover, emergency medical personnel operate under standing orders to attempt resuscitation, whatever an advance directive says. (Only a state do-not-resuscitate or POLST form (see below) can prevent that.) Calling 911 assures that you will go to the hospital regardless of your Advance Directive.
POLST is a state specific form (in other states it may be called MOLST) and stands for physician or practitioner order for life sustaining therapy.
The POLST form does a better job than advance directives of keeping dying people out of hospitals, as research has shown. Completed by health care professionals in consultation with patients, this document can stipulate that only comfort measures be applied or full life-prolonging interventions — or various options in between.
Even this form alone may not be enough. Putting POLST into effect requires a coordinated statewide system involving hospitals, nursing homes and hospices. A national task force is working on a nationwide distribution system.
But even POLST and Living Wills need to be supplemented by an ongoing series of conversations with our relatives or friends who will direct our care when we no longer can. In a crisis, doctors will turn to those people — more than to any document — to learn what we want.
Triggering those discussions may be the most useful thing an advance directive accomplishes.
(Here is a website to download a starter kit from The Conversation Project:
It is quite specific and clear about how to begin and continue to carry out an EOL care conversation. It starts with asking about what things make life worth living for us. But paperwork and completed forms are not enough if our family or friends don’t know about it and if our medical team doesn’t know about it.
I want to give you a flavor of what the CONVERSATION PROJECT starter kit involves.
It begins with some facts.
1. 90% of people say that talking with their loved ones about end-of-life care is important. 27% have actually done so and 56% have not communicated their end-of life wishes. Only 7% report having had this conversation with their doctor.
2. 82% of people say it’s important to put their wishes in writing. 23% have actually done it.
One conversation can make all the difference.
In the Conversation Starter Kit, there are several steps and a series of questions. For example:
1. What’s most important to you as you think about how you want to live at the end of your life?
What matters to me at the end of life is…(finish this sentence)
Sharing your “what matters to me” statement with your loved ones could be a big help down the road. It could help them communicate to your doctor is most important to you—what’s worth pursuing treatment for, and what isn’t?
2. Where I Stand (on a 1 to 5 scale)
I. As a patient, I’d like to know…
1. Only the basics about my condition and my treatment
5. All the details about my condition and my treatment
II. How long do you want to receive medical care?
1. Indefinitely, no matter how uncomfortable treatments are
5. Quality of life is more important to me than quantity
III. What are your concerns about treatment?
1. I’m worried that I won’t get enough care
5. I’m worried that I’ll get overly aggressive care
IV. What are your preferences about where you want to be?
1. I wouldn’t mind spending my last days in a hospital
5. I want to spend my last days at home
V. How involved do you want your loved ones to be?
1. I want my loved ones to do exactly what I’ve said, even if it makes them a little uncomfortable
5. I want my loved ones to do what brings them peace, even if it goes against what I’ve said
VI. What do you feel are the three most important things that you want your friends, family and/or doctors to understand about your wishes for end-of-life care?
When would be a good time to talk?
The next big holiday,
Before my next trip,
Before I get sick again,
The next time I visit my parents/adult children,
At the next family gathering
In response to deficiencies in physician communication about end-of-life care preferences, experts have endeavored to move ACP out of physicians’ hands, from the clinic to the dinner table.
The Conversation Project is quite specific and clear about how to begin and continue to carry out this EOL care conversation.
It starts with talking about what things make life worth living for you. But paperwork and completed forms are not enough if the family doesn’t know about it and if our doctors don’t know about it.
But advance care planning conversations should shift from POLST and Living Will choices about specific treatments to what is acceptable quality of life and how treatment burdens should be weighed against the probabilities of successful outcomes.
There are two other special cases that require a particular approach to advance care planning: adolescent EOL care and Alzheimer’s and other dementias.
A poignant cover article in the 3/28/15 New York Times discussed the special situation of adolescents who are often mature enough and interested in determining what they value and what they want in terms of their treatment and last wishes. A program called Voicing My Choices was developed to address the special needs of this group. It provides a path for documenting choices for teens and young adults who are facing their death.
Although many Americans believe people with Alzheimer’s (PWA’s) should have the right to voluntary euthanasia, this is illegal throughout the United States.
This leaves mentally competent PWA’s who want to maintain control over their dying in the position of taking action while they still can.
If PWA’s lose capacity, then they must rely on legal surrogate decision-makers to decline or discontinue life-sustaining treatment.
This path, however, requires patients to be very proactive in documenting their wishes and in selecting an appropriate legal surrogate decision-maker.
It is most important to communicate these wishes to family, medical providers, the legal surrogate decision-maker, and others – and acquiring their pledges to honor them.
PWAs who want to avoid life-prolonging medical treatments should also make a
Here is a very useful Advance Directive specifically designed for PWAs. It is quite detailed and tailored to the variety of difficult issues that should ideally be addressed while someone has decision making capacity.
Perhaps the single most important decision PWAs make is naming the right person to be their
surrogate decision-maker in a Durable Power of Attorney for Health Care.
PWAs often feel obligated to name their spouse, partner, or a child to be their surrogate
decision-maker. The candidate for decision-maker is not a good choice if he or she does not fully support the person’s decisions or is not assertive enough to confront medical and long-term care providers who disagree with his or her choices.
I have mentioned several important and very useful internet based resources: NJ POLST forms, the special Advance Directives in the case of dementia and the website for the Conversation Project.
I have reviewed and been impressed by the information available on the Compassion and Choices website (https://www.compassionandchoices.org/). Not only does it have most of the forms I mentioned, the organization also has trained counselors to provide telephone advice to individuals and family members about EOL options. Their hotline is: 800-247-7421 In addition they have a Doc to Doc hotline.
One of greatest human freedoms is to live, and die, according to one’s own desires and beliefs.
Death with dignity is a movement to provide options for the dying to control their own end-of-life care.
Dignity comes with considerable effort. This includes empowering individuals, families and having a conversation of EOL preferences.
My goal in this platform has been to review the importance of taking more control of our EOL care if we hope to achieve a peaceful death, one that consistent with our values and what is most meaningful for us.
I hope this review of options, preparations and resources will help you and your loved ones attain the ideal of a good death.
Although the world is full of suffering, it is also full of the overcoming of it.