How aging parents, their children and doctors face?or avoid?the reality of death.
The Letter
To the Editor:
The proposal for Medicare to cover end-of-life planning discussions between doctor and patient was eliminated from the Affordable Care Act, but the need for such talks remains compelling.
In my own experience, not only do doctors tend to avoid end-of-life discussions with their aging patients, but caregiving adult children are often equally silent. When a hospital doctor asked my father if he wanted a feeding tube, he said no. To my knowledge no one?not the doctor or social worker, not my brother or me?ever mentioned the ?D? word. No one said, ?Without the tube, you will die.?
There are plenty of reasons not to enter such sensitive discussions with elderly patients or parents. We don?t want to upset them. We assume that they would ask for details, if they wanted them. We think they know and understand their options, so we respectfully step back from painful conversations.
Doctors may assume that family members are talking about these issues; family members may assume the same about doctors. The subject is so sticky, so uncomfortable, that everyone is happy to avoid it or assign it to someone else.
If doctors aren?t willing to discuss life-and-death decisions more directly and honestly than they do today, caregiving children need to learn to shoulder these responsibilities alone.
These end-of-life talks between parent and child also provide an opportunity for forgiveness and reconciliation. Adult children often find themselves taking care of an aging parent toward whom they feel something less than love. Both may yearn to redress old hurts but wonder, ?Does it make sense to try to forge some type of reconciliation this late in the game??
There are good reasons not to open old wounds with an aging parent. You may find that nothing is gained, and that your relationship ends on a sour note. But when time is running out, this may be the last chance to salve old wounds in a way that?s not possible once that person is gone.
JANIS ABRAHMS SPRING
Westport, Conn., July 24, 2012
The writer is a clinical psychologist and the author of ?Life With Pop: Lessons on Caring for an Aging Parent? and ?How Can I Forgive You??
Readers React
In saying, ?If doctors aren?t willing to discuss life-and-death decisions more directly and honestly than they do today, caregiving children need to learn to shoulder these responsibilities alone,? Dr. Spring deprives the older generation of its independence.
Except for those suffering from advanced dementia, older adults are quite capable of raising the topic of their end-of-life wishes. As functioning adults whose quality of life and experience of dying are on the line, certainly they bear equal responsibility for initiating the discussion.
The responsibility carried by today?s adult offspring alone is to consider their own end-of-life preferences in order to begin the conversation with the next generation in a more timely manner.
ANNE-MARIE HISLOP
Chicago, July 25, 2012?
I am a doctor, specializing in infectious diseases, who often treats patients in the terminal stages. I couldn?t agree more with Dr. Spring about the critical need for candid end-of-life counseling sessions among patients, families and treating physicians. The hyperbolic and misguided references to ?death panels? by Sarah Palin derailed what should have been a springboard for physicians, insurers, patients and patients? families to have open dialogues about when medical care becomes excessive, painful and futile.
This is the elephant in the room that no politician or policy maker is willing to put out there for a rational national debate. Doctors, nurses and other caregivers do not gain anything when we pursue futile care, often in intensive care settings with extremely expensive protocols, because a patient and/or the family ?wants everything done.?
Our collective answer needs to be: ?We?ve already done everything, and now it?s time not for rationing, but for rational care.? We need to face the limitations of our abilities, and the need to let the life of a loved one have a natural ending.
ALAN SANDERS
Albany, July 25, 2012?
While it?s important to start end-of-life discussions, it?s hard to know when to end the discussion. When my mother was in her earlier stages of Parkinson?s disease in her early 50s, she was adamant that she wanted a ?do not resuscitate? order. There was no way, she told us, that she wanted to live ?like a vegetable.? We objected but eventually complied, as it was her body, her wish.
Two years later, her disease had worsened considerably; she was now paralyzed, couldn?t open her eyes, had a feeding tube, and was in a stupor much of the time. Yet it was now, faced with the imminence of death and terrified, that she insisted we rip up her D.N.R. She wanted to live no matter what.
At this point she was in no state for a conversation, and we were left trying to decide which mother to listen to?the alert one who wanted quality of life, or the confused, dying one who did not want to go gently. We ripped up the D.N.R., but as it happened, my mother died at home, naturally, without the life support available in a hospital. Was this her wish or not?
DIANA LAMBERT
Cherry Hill, N.J., July 25, 2012?
About eight years before my mother?s final illness, she presented my brother and me with copies of her living will and medical power of attorney. It was a bit of a shock, but I now appreciate how fortunate we were to have a mother with such foresight and practicality.
Although it was hard to contemplate her death, it set us up to begin discussing the realities. Because of this, my brother and I had a uniform understanding of what she wanted; we had no arguments about whether or not this or that should be done, but were able to stand together to ensure that, as much as possible, her wishes were met?even when it meant standing firm against the doctor.
I suspect that a lot of our reluctance to talk about end-of-life planning has more to do with our fear of losing our parents than with their fear of death. Most elderly people have lost loved ones and are quite aware that death is the ultimate reality.
One thing my mother said that really helped me was, ?I don?t want to die, but I?m not afraid to die.? Because of that, I didn?t feel as if I was deciding to kill her; I knew that I was giving her the autonomy she wanted to die with as much peace and dignity as possible.
MARTHA WHITE
Cardiff-by-the-Sea, Calif., July 25, 2012?
One factor that Dr. Spring did not mention is the different positions taken by the adult siblings of an aging parent. It is often the case that the care and decision-making for that aging parent is disproportionately carried out by only one of the two or more adult siblings.
A tug-of-war ensues, as the decision-making adult sibling is constantly confronted by the adult sibling on the sidelines who carps and complains but does nothing but sow confusion and dissension about what steps need to be taken.
MARC ROGERS
Sherman Oaks, Calif., July 25, 2012?
As the author of the end-of-life provisions ( infamously known as the ?death panel? provisions), I was drawn to the Invitation to a Dialogue about end-of-life planning.
End-of-life planning was actually not ?eliminated? from the Affordable Care Act.? The reconciliation process used to pass the bill in the Senate prevented it from being included.?Congress has actually never voted against it. It had bipartisan support on the committee level and previously in the full House.?
Conversations about end-of-life care should not be postponed until an individual?s final days. We never know when our time will come, or when a loved one may be injured or become ill. Making medical decisions ahead of time, rather than being burdensome, frees individuals to concentrate on the personal and emotional at the end.
We should act now, change Medicare policies and pass bipartisan?H.R. 1589, which provides coverage for voluntary advance care planning consultations. Every person can have peace of mind knowing his or her personal choices will be carried out.
EARL BLUMENAUER
Member of Congress, 3rd Dist., Oregon
Washington, July 26, 2012?
Dr. Spring is all too correct in asserting that the medical community is generally uncomfortable with straight talk about end-of-life issues. Moreover, doctors (especially when the dying patient is in a hospital) often circumvent patient and family wishes. While this may be inadvertent rather than intentional, the effect is the same: The patient does not have a chance to express his or her wishes, much less be assured that they will be followed. So it is largely up to patients, families and caregivers to initiate what we euphemistically call ?the conversation.?
A word to adult children: Before having the conversation with your parent(s), have it among yourselves. You must come to a consensus that Mom and Dad?s wishes will be honored, whether or not you are in agreement with them.
Mom and Dad: You must make your desires and intentions clear, in writing, using documents that are honored in your state of residence. Review the documents periodically?your thinking may change as you watch friends and relatives make their final passage. And don?t bury the documents in a file cabinet. Store them on a flash drive and give it to the person who holds your power of attorney.
Finally, be sure your designee will honor your wishes. You may want to give this job to someone other than your spouse or children.
Those of us in the baby boom generation have both the opportunity and the responsibility to initiate the conversation with our children, caregivers and doctors. Many of us have lived through the process with our parents, and we want it to be different when our time comes. Well, if we want to be in charge, we have to take charge.
HELEN C. GAGEL
Evanston, Ill., July 26, 2012
The writer is the executive director of North Shore Village, which helps older adults age in place in their own homes.?
It?s all well and good for adult children to discuss end-of-life issues with their aging parents. But such conversations cannot replace end-of-life discussions with doctors and nurses, who know about the potential benefits and harms of interventions like feeding tubes. Patients need accurate information about the possible consequences of their treatment choices. Medical professionals are the ones who can?and should?deliver that information.
REBECCA DRESSER
St. Louis, July 26, 2012
The writer is a professor of law and bioethics at Washington University Law School.?
Most doctors avoid talking about the ?D? word because of the difficulty of the subject, lack of preparedness and training, lack of time and many other reasons mentioned by Dr. Spring. But that is changing. The American Society of Clinical Oncology, of which I am a member, has made it its priority to improve the communication skills and education of cancer specialists in ?breaking the bad news.?
In the United States, hospitals that receive Medicare funding are required to ask all adults presenting for admission if they have an advance directive. It is a well-meaning but awful regulation. It is the worst time to discuss advance directives, since it implies that one may die during that particular hospital stay.
The time to discuss advance directives and issues relating to end-of-life care is at home, at the kitchen table, in churches, synagogues and mosques, in high schools and colleges, between spouses and siblings, between parents and children, and, most important, at the time when we are healthy and are not threatened by a serious illness.
Each situation is unique, and each decision is affected by one?s faith tradition, life view, past experiences and family dynamics.
KHALID REHMAN
New York, July 25, 2012
The writer is a retired medical oncologist and a past medical director of a hospice.
The Writer Responds
I agree with Ms. Hislop?s point that the elderly should ?bear equal responsibility for initiating? end-of-life discussions. But we shouldn?t assume that they?re any more free to talk about death and dying than are caregivers or doctors. The subject is often too toxic to touch.
Dr. Sanders points out that caregiving children often insist on doing everything possible to keep their elderly parents alive. If doctors fostered a more open dialogue, families might discover other equally loving alternatives, such as ?do not resuscitate? or ?allow natural death.?
Ms. White?s experience resonates with me and many of my patients: When aging parents spell out their end-of-life wishes to their children, this is an act of supreme kindness. Adult children aren?t left wondering what?s the loving thing to do?to end life or prolong life?
My advice to aging parents: Make your health care wishes known to your children with the utmost specificity. Let your family know if you want them to level with you about your health and tell you when you are dying. If possible, let them know when you?re ready to go.
My clinical experience confirms Mr. Rogers?s observation about sibling rivalries. This is a time of high drama. Often family members find themselves battling over the best course of treatment, when they?re really tearing at old wounds: ?Why did you get Dad?s business?? ?Why do you always have to be in control?? ?You always think you?re right.? Siblings may need to unpack and redress the personal meanings of these old ruptures before they can agree on life-or-death decisions for their elderly parents.
JANIS ABRAHMS SPRING
Westport, Conn., July 27, 2012
Source: http://keithburgess-jackson.typepad.com/blog/2012/07/from-todays-new-york-times-14.html
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