Adult Guardian Services

The Adult Guardian Service (AGS) program in Cleveland, Ohio provides court appointed guardians to adults who are completely alone and need an advocate or may not be alone, but not have a person appropriate to make health care and financial decisions. There are guardians for person and the estate. This is a volunteer program that relies very much on its volunteers and fund raising.

I heard about the program through 2 professors at the Frances Payne Bolton School of Nursing at Case Western Reserve University. AGS provides training and ongoing support and oversight. I did make a trip to court to be formally appointed to the 2 wards that I was assigned to. I visit my wards monthly, review their charts as needed, attend quarterly care meetings, and talk with staff as needed. Both wards have some cognitive impairment and forming a relationship with them is a work in progress. I have been their guardians for a year and have not had to make any important medical decisions. I do have the responsibility for advance directives and that was very thought provoking. I do know that if there was an emergency and needed to consult with AGS, they would be there for me.

As a gerontological clinical nurse specialist, I have a special interest in the elderly and really enjoy this type of service work. However, it is really rewarding and should be considered if someone is looking for a volunteer opportunity that is not time intensive and is flexible. If interested contact AGS - http://www.agscleveland.org/aboutus.html

Dying Alone

No-one should leave this world alone. My frame of reference is primarily nursing home, home health, and hospice. In those settings, I can't recall a situation where a patient died alone. Of course, there are those unexpected deaths that catch family and staff off guard, but what is the practice or policy when staff knows that a patient is actively dying? On a busy hospital floor, I can see how a patient without a family member or significant other present could die without someone present. Technically, they are not be completely alone on a hospital floor, but I doubt that a staff person is holding their hand at the time that they take their last breath. Several weeks ago I was on a hospital floor. A terminally ill patient died at 0945 and the family was not present. I have been thinking about it ever since.



What about the patients that have no one? To have no-one is more common than one may think. The Adult Guardian Services (AGS) of Cleveland provide volunteer court appointed guardians for people who have no-one. In 2005, they had 502 clients. I have 2 "wards" through AGS that reside in a nursing home and they have no-one in the world willing to be a part of their lives or advocate for them, but me. No-one visits them, but me. Unless I am present when they die, they too may die alone.



What can nurses do to advocate for their health care facility to address this issue and provide someone to be present when a person is actively dying (changes in breathing, congestion, unresponsiveness, and decreased circulation)? I had the pleasure of visiting Malachi House in Ohio City (Cleveland neighborhood) which serves terminally ill persons who may other wise be homeless. It is a wonderful program with an active volunteer group. Staff or volunteers sit vigils with a resident who is actively dying until they die. I also know that hospice programs have volunteers that could be used in that capacity as needed and to support a family for respite.



What a wonderful volunteer opportunity to have the honor of being with someone as they take their last breath. Hospitals and many nursing homes have organized volunteer programs already. Why not add this to your palliative care services? A volunteer can be trained with much of the same programming that a hospice provides to its volunteers. This relieves some emotional burden from nurses who are also tending to other patients. I believe that nurses may be the only health care staff that would recognize this as a concern. Nurses need to address this in their next practice committee or management meeting.

Where Do We Go From Here?

From a legal perspective, an advance directive document would've given the son some "teeth" in terms of support for the decision to die at home. He and the health care providers wouldn't have had to rely on "substituted judgement". However, advance directive or not, there was a lack of knowledge among the coroner, sheriff, and district attorney about end of life processes. In my opinion, there is leeway for the sheriff and district attorney for lack of knowledge of end of life processes, but not the coroner who is a MD. The literature is still referring to continuing need for education in this area. I was frustrated in this case to find that these people did not seek medical advice or opinions until the defense attorney provided it to them in the form of my meeting with them and a letter from Dr. Barbara Daly. Why didn't they seek counsel? Why did they wait four years to indite the family? Were there politically motivating influences?

Why wasn't education provided to the family by the physician, nurse practitioner, or home care agency? Why wasn't a hospice referral made? Was there a knowledge deficit because it was rural, small town versus bigger city teaching hospital ? The photographs not soon after the death would be alarming to a non medical person. Yes, her physical condition at death would've probably been better had she been in a hospice program, but this family did nor receive the needed support or direction from their health care providers. They did not "know what they did not know". They did the best that they knew how.

Nursing and medical school curriculum need more content in the dying process: physiology and comfort measures. It is not just the job of hospice to provide that education and support to patients and families. Not every patient chooses hospice and that makes it important that all health care providers have the knowledge. We also need to teach more depth in advance directives and not solely at the knowledge level of content. The inclusion of affective learning objectives through case study and reflection would add a lasting dimension to the content.

Lastly, what can the legal nurse consultant do to facilitate learning for the legal profession? Educational programs can be provided at bar association meetings, to coroners, and to the courts to increase knowledge so that another family would never have to incur the expenses or emotional trauma that this case inflicted.

Mrs. C. & Advance Directives

In reviewing this case, I didn't come across any advance directives in the medical records. The Centers for Medicare & Medicaid Services requires all health care professionals or organizations that participate in those programs to address advanced directives with the patient. This requirement is related to the Patient Self Determination Act discussed in the previous post. What does this mean if you are a physician or home care agency? The intent and spirit of the law is that the health care provider ask the patient if they have advance directives. If they do, it is requested that a copy be provided for the file. If they do not, the health care provider will provide counseling to recommend and assistance to complete if needed. Anecdotally in my clinical experience, I do not see the "push" to provide the assistance to get the paperwork completed. There is a tremendous amount of literature that discusses the lack of advance directives for the elderly. There is no consensus in the literature that I reviewed for a reason that advance directives are not routinely signed. Some articles cite a need for more education of nurses and doctors of the importance of "pushing" the issue with their patients. Other literature discusses the need for assistance and education for elderly and low income populations. "End of Life" planning is not a topic that is easily discussed and many people want an choose to "put if off".



In the case of Mrs. C., there were no written advance directives. The testimony by family and friends was that Mrs. C wanted to die in the home that she spent her whole life in. Her son intended to honor that wish. Substituted Judgment was in place at this time.There was no documentation in either the physician's or home care agency's records that this was in place. The physician and the home care agency followed the plan to keep her at home until a week before her death when the nurse practitioner from the physician office discussed nursing home placement. This discussion was precipitated by communication from the home care agency about her poor physical condition. Neither health care professional documented any support or education for the family about palliative care or the need for hospice care. Adult Protective Services was called by the physician's office in the spirit that the son was not taking proper care of his mother. The son was not told of the referral nor counseled on the care issues for his mother.



On the day that Mrs. C died, the sheriff made a visit to the house as is customary in that community when 911 is called and hospice was not involved. He was shocked by her emaciated condition and bed sores. Four years later the son and granddaughter in-law were indited for manslaughter in her death.



Would an advance directive have made a difference? I am not sure. There is no documentation to reflect a disagreement between health care providers and the family. The discussion about nursing home placement does reflect some concerns by the physician, but Mrs. C did not go to a nursing home.The son stood by his beliefs.



The ethical issues that I see in this case are:

Advanced Directives

The timing of today's post could not be better. I attended a lecture "Legal Issues Affecting a Terminally Ill Patient" presented by Dr. Cowan who is also a lawyer. It was hosted by the Law-Medicine Center of the Case Western Reserve University Law School. The bulk of the presentation discussed advanced directives.

A bit of background on advanced directives and durable power of attorney for health care. The 1991 Patient Self Determination Act (federal law) is where advanced directives got their start. They are legal documents designed to allow a lay person to plainly express their wishes for what they would medically want done or not done for them in the event that they are incapacitated and can't make that decision for themselves. The form is available on line or through many health care providers. The patient must sign the form in front of witnesses and directions are provided. The durable power of attorney for health care is a document that designates a person to make decisions for you if incapacitated. It is also widely available.

The Patient Self Determination Act also requires any providers that participate in the medicare and medicaid programs to ask the patient if they have an advanced directive. If they do not, they are to be offered a form and assistance/education to complete one. It is in the family, patient,and health care providers' interest to have completed one. Lack of advanced directives can result in family turmoil in times of crisis and difficulty for physicians in providing appropriate care. Certainly the most recent famous case involving turmoil with an advanced directive is Terry Sciavo (http://content.nejm.org/cgi/content/full/352/16/1630). Dr. Quill discussed the concept of "substituted judgement" and asks us to listen to the patient's voice as expressed through the family and close friends. "Substituted judgement" is when a person, usually the next of kin is called upon to make a health care decision when the patient is unable to make it. It is assumed that this person knows the wishes of the patient. It could be a close friend if there is no family.

Dr. Quill also tells us that we need to continue to educate the public and some health care providers that dying in a natural way without artificial nutrition and hydration is humane and more comfortable than with intravenous fluids or tube feedings. I will discuss the dying process in a later post.

Next post: Mrs. C and advanced directives

End of Life Care Part 3 - the physician and NP

Mrs. C. was under the care of a family practice physician as the primary care provider. A NP (nurse practitioner) in the practice also followed the case. The family was very diligent in bringing Mrs. C in for her appointments and had frequent telephone contact. It was the physician who had made the referral for home health care. It was certainly appropriate for an agency to be following Mrs. C's care as she had become very home bound. It was more and more difficult for the family to bring her to the physician's office. A RN case manager in the home can make assessments and call the physician as her condition changes. The physician and NP documentation doesn't reflect any end of life care discussions until the very end when the communication by the home health agency reflected difficulty with family coping. Instead of suggesting hospice as an alternative, the NP suggested a nursing home. The son was unable to make a decision immediately and she died within a week. At this same time, the NP made a referral to Adult Protective Services (APS) with the concern that the family was not providing adequate care. The son was very conflicted knowing that his mother's wish was to die in the house that she lived in her entire life. The physician did not intervene at the time of death to sign the death certificate. It became a coroner's case because she was a not a hospice patient and likely because of the APS referral. The records did not reflect advocacy for the patient and family in terms of acknowledging the end of life illness and appropriately planning for the care and related issues. This lack of advocacy among other issues that I will discuss led to the upcoming legal problems and heartache for this family.

Part 4 - Advanced Directives

End of Life Care Part 2

In the summer of 2008, I was contacted by a Columbus, Ohio defense attorney representing a son who was accused of neglecting his mother to the point of death four years prior. Interestingly that four years had passed before he and his daughter in-law were charged with manslaughter. I had to question the political influences because the case was re-opened by a district attorney new to office. The case had caught the attention of the local and Columbus police as well as Internet blogs about end of life care.

I was asked to review various records that included police interviews with both suspects, physician and home health agency records and pictures taken at the time of death when the sheriff came out to the home. I was then asked to form an opinion regarding the end of life care that was given at home and the role that the supporting agencies played. I needed to change legal nurse consulting hats from my usual civil work. I had to consider "beyond a reasonable doubt" rather than the "preponderance of the evidence" in civil malpractice or negligence cases. The burden of proof fell on the State of Ohio to establish that Mr. C did indeed kill his mother.

Mrs. C had Parkinson's Disease, the Lewy body type. Parkinson's Disease is a progressive, chronic motor system disorder characterized by tremors, postural instability, rigidity, difficulty swallowing, impaired balance and coordination. There is currently no cure for this disease, but medication offers dramatic relief from symptoms in most cases. As the disease progresses, there is less noticeable relief from available medications. Michael J. Fox is the celebrity who has called attention to this disease and stepped up fundraisng and research efforts. http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm. Lewy body type refers to a type of dementia that is also linked to Parkinson's Disease and characterized by fluctuations in alertness, attention,and lengthy periods of staring into space.http://www.ninds.nih.gov/disorders/dementiawithlewybodies/dementiawithlewybodies.htm.

The time period in question saw Mrs. C at the end stages of the disease. Her appetite had significantly diminished and she also had difficulty swallowing. She had become bed bound and was incontinent of stool and urine. The son and daughter in-law routinely took her to the physician and had been in phone contact with the MD and NP until the end. A Speech Therapist had been involved to assess the swallowing and idenify the aspiration risks. Instruction had been given to the family on proper technique of feeding to reduce the aspiration risk. A local home health care agency (owned by the local hospital) was providing a nurse to oversee the case (case manage) and a home health aide to assist the daughter in-law in providing personal care. The daughter in-law who had nurse aide training accepted primary responsibility for her care. The documentation by the home health agency depicts a caring, engaged family, but there is also an entry describing a home health aide report of a urine soaked client upon arrival. Despite the deteriorating condition, the home care agency reduced the number of aide visits per week from two to one , necessitating the family to make other arrangements for in home care through a paid caregiver and other family members. The home care agency was providing services from 4/13/03 until her death on 6/30/03. Early June saw the beginnings of skin breakdown and documentation that the caregiver was independent with wound care. By mid June, there was more skin breakdown and despite consistent documentation of incontinence, a catheter was not inserted until 6/20/03. Documentation also reflected a declining appetite and difficulty swallowing. Despite her diagnosis and evidence of a terminal condition, there was not one entry in the home care record that reflected an acknowledgement that the family needed some type of end of life care.

Part 3 : the physician and nurse practitioner