A happy day in Guardianship Court: Restoration

Today I had the great fortune to participate in a case in which a person who has been under guardianship for six years had their capacity restored in full.  This kind of situation doesn’t often happen, but it’s really fabulous.

This case started in 2010 when the parent and sibling came to me in an emergency to report that their loved one who I’ll call “X” had suffered a burst aneurysm and a stroke, and was in a coma in the hospital. The hospital advised that they seek guardianship, as there was no power of attorney or health care proxy in place. We filed the necessary papers, and the parent was appointed Guardian. The “ward” — a former executive with huge responsibilities at a major New Jersey corporation —  required extensive hospitalization, but eventually arose from the coma and was released. “X” had a very slow improvement in high level intellectual ability. Also, “X” had various lower body physical handicaps including partial paralysis and required a lot of hands-on assistance.

The family was utterly devoted, and with each year, “X” got stronger and more of “X’s” intellectual processing returned. At one point, “X” asked us to go back to Court, as “X” wanted to revoke “X’s” prior Will and make a new plan. That was accomplished, with the help of the “ward’s” court-appointed attorney. The Guardian and family continued to assist the “ward” with challenging exercises and tasks to help “bring the brain back.”

Finally, the Guardian contacted me and basically said “we think that “X” is ready to regain control of all decisions about their life. “X” has physical handicaps, but “X” can handle those with amazing specialized equipment which “X” knows how to use, and “X” will ask for help when necessary.” So we filed the necessary Verified Complaint with supportive medical reports, and today, following a hearing, the Judge granted “X” restoration of full capacity.

Pursuant to N.J.S.A. 3B:12-57.g.,  Guardians are required to encourage the ward to participate in decision-making “in order to encourage the ward to act on his/her own behalf whenever s/he is able to do so, and to develop or regain higher capacity to make decisions in those areas in which s/he is in need of guardianship services, to the maximum extent possible.” The incapacitated person has the right to petition the court for modification or termination of the guardianship, R. 4:86-7(a)(6),  and the Guardians have the duty under N.J.S.A. 3B:12-57f(10) to institute such legal actions as the “ward” could institute. How is that done? By filing a formal Verified Complaint and order to Show Cause with the court who has jurisdiction over the guardianship, supported by medical proofs and other relevant evidence.

Needless to say, “X” was grinning from ear to ear to receive the Judgment of restoration. So was the Judge … they rarely have the opportunity to see such a fantastic recovery by a person under guardianship.

Call us for advice on guardianship, conservatorship, power of attorney and elder law …. 732-382-6070

 

 

What to do when you think it’s time to refuse further treatment

If you are the Guardian of the Person or the designated Health Care Representative for a person who is extremely mentally incapacitated, there may come a time that you may face that most dreadful of decisions. You may wonder whether to treat all new medical crises. The person you are responsible for may have advanced Alzheimers or other dementia, may be incapable of expressing themselves, or may be functionally incapable of interacting in a knowing way or performing any physical act without assistance. This is a delicate matter. There are intertwining considerations of law, bioethics and even religion, and a heavy burden is placed on the health care decision-maker.

These decisions aren’t necessarily restricted to the ones involving life-preserving measures like installation of a gastric feeding tube, pacemaker, or respirator (ventilator), or decisions about whether to embark on kidney dialysis or performing major surgery such as a liver transplant or non-laporoscopic heart valve replacement. You may be faced with decisions about whether to hospitalize an incapacitated  patient for a new medical problem when the patient already has advanced and debilitating congestive heart failure or has become severely impaired by numerous complications of diabetes such as peripheral neuropathy, or extreme vision impairment. You may be wrestling with whether to subject the patient to chemotherapy or radiation treatment for newly-diagnosed cancer.

It is important to have a frank conversation with the primary physician who coordinates the care for the patient. What should be the overall goal for care at this point? If the underlying chronic conditions will never get better and will certainly continue to get worse, is it time to just keep the patient comfortable and as pain free as possible in their bed, and avoid hospitalization? Anecdotally, I have been told by nurses who have years of experience with patients who have long-term advanced dementias that they observe patients experiencing  disassociation and disorientation  each time the patient is hospitalized, and they report that although the treatment stabilizes the patient  for a short time, there may be no no overall improvement in the underlying degenerating condition . The health care decision-maker often feels that their patient is suffering as s/he goes through a new round of  tests, tubes, needles  and exams. Yet there is a natural assumption that if a person has a degenerating condition which periodically flares into a medical emergency (such as congestive heart failure or COPD), each new episode should lead to hospital admission for acute care.

If your patient is living in a nursing home, have a frank discussion with the treatment team, especially the nurse and doctor who have who primary responsibility for the patient. I have attended such meetings with my clients over the years, and they are difficult but important. Ask about how to obtain a Do Not Hospitalize (DNH) order and what it would cover. For instance, a fracture may need to be set outside of the nursing home. Find out about the broad array of comfort treatment that can be provided within the nursing home such as IV antibiotics and oxygen. Ask the doctor about issuing a DNR (do not resuscitate) order in the chart.  Make sure that the patient is never sent to the hospital without your advance notice and consent. Make sure that the treatment personnel do not give the patient any legal forms to sign. And complete a green POLST form for the chart which sets out your wishes for the goals of the patient’s care.

For advice and advocacy in carrying out your role as surrogate medical decisionmaker, call us at ….732-382-6070

Thwarted by HIPPA rules? Persevere.

Protected health information can’t be  disclosed to anyone but the patient or the patient’s authorized recipients.  If you are the court-appointed Guardian of an incapacitated person, or you are a designated Agent under a Health Care Proxy or Health Care Power of Attorney, you may have encountered roadblocks in trying to get access to the records of the person you are acting for.  These protections of confidentiality were always a matter of common law but were explicitly set down in the Health Insurance Protection and Portability Act of 1996, usually called “the HIPPA Law.” The law allows the patient to sign a HIPPA-compliant records release. The law also explicitly states that a Guardian is an authorized recipient, and that the designated Health Care Proxy/ Agent/ Representative is an authorized recipient. Nonetheless, even if you are authorized, you may hit roadblocks getting access to the medical records of the incapacitated person.

I encountered this recently and I have to say it was just maddening. I have been  the Legal Guardian [of Person and Property] for a certain individual for about 15 years. Two months ago he had a serious injury and was admitted to the hospital. The patient has been in that hospital before and I thought that my guardianship record had been placed on the chart. Arriving at the hospital on the weekend without my guardianship certificate, I discovered that they could not check the prior charts, and of course would give me no information. At 7:30 Monday morning, I faxed up the guardianship certificate with a request that the nurse or doctor call me. By mid-day  I had heard nothing and when I called in I was told that those faxes go to a central fax room and don’t get delivered right away [though I had faxed it to the direct line at the nurses’ station]. This whole process had to be repeated and finally a day later I was able to have a telephone meeting with the treatment team. Then he was back in the hospital, and on arrival at the hospital a few mornings later the floor nurse wouldn’t allow me to review the patient’s chart, citing HIPPA, and I had to again provide the certificate because they still hadn’t actually entered this critical information into the patient’s chart.   Even with that it took several conversations until the nurse was persuaded that I had authority to not only see the chart but to make the decisions and sign the Consents to Treatment. When the patient was discharged to an outside  subacute facility, the hospital didn’t provide this guardianship information with the transfer paperwork and I had to start it all over again. When he went back to the hospital, a new chart was being created and again, they found no record of my guardian status. Start again.

The usual Health Care Power of Attorney appoints a decision-maker to make the medical decisions if the doctors determine that the patient is incapable of giving informed consent. A good document will also say that its effectiveness is not diminished by the mere passage of time, and it will also grant HIPPA access to information. However, if the patient isn’t incapacitated, the patient may still have to sign a new HIPPA authorization in order for the treatment team to be willing to share information with you. That wouldn’t install the person as surrogate decision-maker at that point, but it would give them access to necessary information in order to be able to assist the patient to make decisions about treatment. Here is a downloadable PDF of a HIPPA-compliant form which we provide to all of our estate planning clients. HIPAA FORM.

The moral of this story is: (1) always bring the original guardianship certificate or health care power of attorney to the health care facility with you, (2) get an updated guardianship certificate one a year so that it is reasonably current; (3) if you are the health care proxy but your person isn’t mentally incapacitated, ask him or her to sign a medical release authorization and place it in the chart so that you can have access to information.

Call us for legal advice concerning the appointment of health care representatives and functioning as a guardian or power of attorney ….. 732-382-6070

Family caregivers and decisionmakers in the complex care of dementia patients

Tha AARP and the National Alliance for Caregiving report that there are 40 million Americans taking care of family members with dementia such as Alzheimer’s Disease, cancer, and other debilitating chronic diseases, or physical disabilities, and that 25% of the caregivers are under 35 years old. The medical issues can be complex. There can be myriad medications to manage and the side effects can impact the patient’s cognitive ability, response time and behaviors. The family caregiver needs to be companion, advocate, assessor of unusual clinical responses, emergency manager, monitor of symptoms, transportation provider, and assistant for decision-making. They may or may not have received specific training in the care the patient requires. Should the caregiver also have authority to actually make decisions on behalf of the patient? Maybe yes, maybe no. It depends on the circumstances.

The line between the work of caregiving and the authority for decisions can get blurry. It’s important to discuss this subject when preparing powers of attorney.  At times, one child is given authority as Power of Attorney and Health Care Representative, and then also moves in and becomes the 24/7 caregiver when the parent can no longer safely live on their own. If the same person is responsible for all caregiving and all financial matters, it can be truly overwhelming and there could be a loss of objectivity.When a person requires 24/7 care and a devoted family member is the full-time caregiver, expanding the team and  dividing up the responsibilities can go a long way to make the job more manageable, and assure that the whole picture is being seen. Perhaps one person should have authority over the assets, income, bills and contracts, and another person should have responsibility for health care decision-making. Sometimes the person providing the live-in care should be the health care decision-maker, but not necessarily.

To guarantee broader input and communication, a patient may want to divide up the roles. But again, this is simply not always possible. The family may be small, or most of the family may be far away, or there may be other family dynamics in play.

There are ways to ensure collaboration between caregiver and the designated agents. For example, the financial Power of Attorney and the health care proxy or advance directive documents documents can obligate each designated agent to  share information  with the other and to consult with each other. The person who is the general agent under the power of attorney could be given the authority to delegate some power to the person who is the live-in caregiver so that they can manage some reasonable size bank account on a day to day basis in case there’s a need to buy things. Or they can be given authority to utilize  a debit card on the patient’s bank account with a certain limit.

Another idea is that the financial power of attorney document can expressly allow a family member to be hired as a live-in caregiver, and can direct the Agent to pay a wage that’s in line with similar occupations. When caregiving is paid for, it eases the economic pressures on the care giver, but it does raise other issues such as wage & hour laws and potential Medicaid scrutiny if the parent runs out of money within 5 years and applies for Medicaid benefits.

No matter what, either the patient or their authorized agent may want to sign HIPPA release forms for certain purposes so that the caregiver can access the relevant health care information that’s needed for them to do their job.

For legal advice on elder care planning, caregiver employment, and estate planning, call us at … 732-382-6070.

Aging in Place: Make a Plan, Assemble your Team

“No matter what, please keep me out of a nursing home!” How often do people hear their parents say this, as the parents enter their most senior years. The reality is that aging in place is a complex but achievable endeavor for most people. Whether you are the person who hopes to “age in place,” or you are the person who will have responsibility to make it happen, you need a plan, and you will need a team. There are so many details to consider, and developing a general plan in advance can really help you and your family when the time comes that you really can’t do it all on your own.It’s crucial that you face the issues honestly and make practical choices.

This post uses “you” as the aging person/parent, but if you are already the power of attorney for them, you need to deal with these issues as well. I’ve included links to some businesses as examples, but I am not specifically endorsing them or vouching for them.

Legal matters: Meet with an elder law attorney. Make sure you have a Durable General Power of Attorney (POA), Health Care Proxy and a Last Will and Testament. Include everything necessary to customize your plan for the lifestyle you want. Discuss your family concerns confidentially with your lawyer so that your plan meets your particular needs and you can try to ward off potential fights among your family members. If you have been appointed to the job of POA, health care representative or Executor of the eventual estate, talk to a lawyer to get a thorough understanding of your responsibilities and the extent and limits of the authority you’ve been given.

Pick your first responder: Who will be the first responder in case of a medical emergency? Be practical. The most beloved eldest child who lives overseas may not be the sensible choice. Fill out HIPPA forms for your doctors and hospital so that your first responder can see the chart or call in for information.

Pick your trusted fiduciary: Who will manage your assets, hire caregivers and pay your bills if you develop dementia? Again, be practical. Being Power of Attorney is a JOB, so make sure the person you select is willing and capable of doing it.

How’s the home? This is the time to bring in someone to examine your premises and help you make all the necessary changes so that you can live safely  in your home over time. Some interior designers specialize in this kind of thing, and bring in the contractors for the necessary safety repairs. Geriatric care managers can also do the assessment and make suggestions. With increased physical frailty or confused thinking there is increased risk of falling, which can cascade into serious disability. Consider everything — Stairs;Railings; Worn out carpet; Hard doorknobs; Grab bars; Walk-in tubs; location of the washer & dryer.

Transportation: Who will take you to your doctors’ appointments?  Find out if any taxi services will  escort you between your door and their vehicle. Have a plan in case you cannot walk well or can’t manage your own wheelchair. How will you get yourself from the parking lot into the doctor’s office, Non-medical Home assistant services are available, and can accompany you to appointments and errands, but usually you have to book them ahead of time on a schedule with a 2-hour minimum per shift.  Often you can find volunteers  through your religious congregation as well.

Grocery shopping: In some locations there are stores that will assemble and deliver the order to your home every week. Otherwise, you need an arrangement with someone to do the shopping for you.

Prescriptions: You may want to use a local or mail order pharmacy that can get all your renewals onto a consolidated schedule and deliver everything to the home. This can take a few months to establish, but can go very far to make the whole medication issue more manageable and prevent medical problems. Some pharmacies will even create blisterpaks with pre-set pill combinations for each time of the day.

In-home services and someone to run your errands: Clothes and shoe shopping can be done on line, and you can often arrange for the returns to be picked up at the house.  Some dry cleaners will do pick-ups and drop-offs. Some hairdressers may make house calls. Some physical therapists will treat the patient in the home. The list goes on and on.

Tidy up and De-clutter: get someone in to help you go through all of the things you’ve accumulated during your long and wonderful life. Call the kids and grandkids and have a celebratory “take it, keep it, or recylce/pitch it out” event.

Careful planning can prevent a crisis. Making sure the home is safe  is crucial. Making sure your legal affairs are organized is crucial. Investigating all the in-betweens that a person needs help with, and making lists of services that you can call upon in a pinch, will make it easier in the event that you suddenly realize that you need help. Even a plan that is partially used is better than no plan at all.

For elder law advice on estate planning and planning for a good old age, call us at … 732-382-6070