Hospice Patients Alliance: Consumer Advocates
Question: was it hospice or was it murdere?

Stanley was getting up in years having just passed his 85th birthday. He was an extremely active man with full use of his mental faculties, even in his advanced years. He even volunteered at the local YMCA, helping to clean up around the place and helped some troubled boys by speaking with them and spending time with them at the YMCA, watching them play. Some of them looked up to him like a Dad. However, Stanley had been diagnosed with colon cancer a few years before.

After several days of having difficulty urinating he found that he was unable to void (or urinate) at all. The urine made by the kidneys started to build up pressure in the kidneys and he became extremely agitated and was screaming in pain. His daughter called 911, and he was sent by ambulance to the hospital suffering from severe pain and an infection with a very high fever. Pain and infection are common when urine backs up into the kidneys.

Shortly after Stanley was admitted to the hospital, the doctors diagnosed his condition and performed a procedure (having placed a "stent" to relieve the pressure on the kidneys and allow the urine to drain out). The doctors gave him antibiotics for infection, and strong sedatives and pain medications to help calm Stanley down.

Stanley fell asleep from the strong sedatives and pain medications. His 65 year-old daughter, who had been appointed by Stanley as his Representative for the purpose of making medical decisions (in a Medical Durable Power of Attorney for Health Care Decisions), decided that Stanley was dying. She became convinced that it was only a matter of days before Stanley would actually die and told all the other relatives that Stanley was dying. The whole family came to the hospital expecting Stanley to die.

Stanley developed some nosebleeding after a few days in the hospital and swallowed that blood down into his stomach. When Stanley first tried to eat after waking up, he vomited the food up and his daughter saw blood. Stanley's daughter was convinced that the blood was somehow related to his colon cancer. When he asked for food again and said he was "thirsty," his daughter and some of the other family members decided that the blood in his vomit meant that he was dying, and he should not and could not be allowed to eat or drink anything, since "it might make him suffer more," they said. They "just wanted him to go in peace" and die without a prolonged dying process.

The doctors explained to all the family members that they did not think Stanley was actually actively dying at this time and that he would recover from the urinary obstruction and the infection that accompanied it. They said that it is normal to encourage drinking fluids after someone has a urinary obstruction relieved. Stanley began to beg for water and food. The nurses in the hospital sneaked him some water whenever they could, because they knew he was not dying right then (and it was appropriate for the recent urinary obstruction). However, the daughter continued to try to prevent Stanley from getting food or water. Finally, his niece, who had witnessed how Stanley was suffering from the lack of food and water, could not stand the situation any longer. She went to the hospital's ethic's committee and submitted a plea on Stanley's behalf.

Stanley continued to beg and cry for food and water, but as the days went by, he became despondent, sad and depressed. He began to withdraw and wouldn't talk to his daughter (who blocked all attempts to give him any food or water ... against his will). The hospital agreed with the niece's perception of the situation and to avoid legal liability, decided that Stanley had to be discharged from the hospital. He was much recovered from his infection, the pressure on the kidneys was relieved and the hospital did not want to be held responsible for Stanley's untimely death due to starvation and fluid deprivation. However, the niece was not in charge of Stanley's treatment. Stanley's daughter promptly arranged for him to be taken to a hospice facility nearby (Stanley had already been "certified" as having a terminal illness and eligible for hospice due to his colon cancer, but was not yet at the very "end-stage."

When the hospice nurses received Stanley into their facility, they knew he had terminal colon cancer and listened to the daughter explain how Stanley was dying right then and how he had become withdrawn and depressed. She told them repeatedly that Stanley was at the very end stage. The hospice nurses cooperated with his daughter's wishes (to "just let him go and keep him calm and comfortable" since they knew she was the appointed Representative for medical decisions. They withheld all food and water. They used standing orders to give him sedatives which he did not want and continued the use of some morphine which they said was for his comfort. The morphine and sedatives had the combined effect to make Stanley sleep almost all of the time, and when he did wake up, he was confused and disoriented. His doctor did not visit Stanley at all to assess his condition once he was in the hospice. The doctor relied upon what the hospice nurses told him.

Eighteen days later, Stanley was dead.

For more information about hospice and involuntary euthanasia, physician assisted suicide and other issues, vist our information center.

Questions to ask ourselves:

  • Was Stanley informed about his rights in this story?

    The federal law on hospice states:

    • Sec. 418.62 Condition of participation--Informed consent.

      A hospice must demonstrate respect for an individual's rights by ensuring that an informed consent form that specifies the type of care and services that may be provided as hospice care during the course of the illness has been obtained for every individual, either from the individual or representative as defined in Sec. 418.3.[emphasis added]

    "Informed consent" is a basic condition for the provision of all types of health care, hospice included. You and your loved one's must be informed of all treatment options and the hospice plan of care.

  • If a patient, even a dying patient, is still fully conscious and alert, is he the person who is authorized to make decisions about his own care, or does the appointed Representative (from the Durable Medical Power of Attorney) make the decisions?

    The alert and mentally competent adult retains full authority under the law to make his or her own decisions about what health care he wants to accept or what health care he wishes to reject. The Representative has no authority to act until and unless the patient is unable to communicate his wishes or is determined by physicians to be mentally incompetent.

  • If a patient is 70 years old, or 85 years old, or 100 years old, does that patient still retain the right to make his or her own decisions about health care to be provided to him, if he is still mentally competent and able to communicate his or her wishes?

    Yes, any adult patient of any age, who is fully mentally competent and able to communicate his own wishes is still able to make their own decisions about the health care services he will accept or reject.

  • Does a hospice have to follow the patient's own wishes specified in a legally valid Advanced Directive (such as a Medical Durable Power of Attorney form)?

    The regulations contained in the HCFA (now Centers for Medicare Services) State Operations Manual state:


      Under ??1866(a)(1)(Q) and 1902(a)(57) of the Act, a hospice is required to be in compliance with all Federal requirements in ??1866(f)(1) and 1902(w) of the Act, respectively, concerning advance directives. Specifically, a hospice must agree to maintain written policies and procedures with respect to all adult individuals receiving medical care by or through the hospice and must, at the time of initial receipt of hospice care by the individual from the program:

      o Provide the individual with written information concerning his or her rights under State law (whether statutory or as recognized by the courts of the State) to make decisions concerning medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives;[emphasis added]

      o Provide the individual with the hospice's written policies and procedures concerning the implementation of such rights;

      o Document in the individual's medical record whether he/she has executed an advance directive;

      o Not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive;

      o Ensure compliance with requirements of State law (whether statutory or as recognized by the courts of the State) concerning advance directives; and

      o Provide (individually or with others) for education of staff and the community on issues concerning advance directives.

      The facility is not required to provide care that conflicts with an advance directive. In addition, the facility is also not required to implement an advance directive if, as a matter of conscience, the facility cannot implement an advance directive and State law allows the provider to conscientiously object. Compliance with the advance directives requirements is necessary for continued participation in the Medicare and Medicaid programs."

    The hospice must abide by the wishes of the hospice patient. The hospice patient always has the right to accept or refuse specific treatments, medications or interventions. This is the law! A hospice is not allowed by the regulations to force a conscious and mentally competent patient to receive any medication against his will, and it is not allowed by the regulations to deprive a conscious and mentally competent (clear thinking) patient of food or water if the patient demands food and water.

  • Did Stanley consent to the withholding of food and water from him?

  • Did his daughter have the right to make decisions for him when he was fully alert, mentally competent and thinking clearly?

  • Does a hospice have the right to withhold food and water from a patient who is fully alert, conscious, mentally competent and begging for food and water?

  • Was this hospice care? or murder? You decide.

Need more information to make a decision? Take a look at the  Federal law on hospice. Need to know what hospice is really about? Take a look at our hospice topics at the "main page" and learn all about what hospice is really about, what services your loved one can receive. We do not provide these cases to "scare you" but to caution you about such situations which do occur. We hope that by being fully informed, you will be able to prevent similar situations from interfering with the dignity of your loved one's last days with you. Be fully informed about hospice and you can prevent these types of problems from occurring.

What Can We do about this type of situation?

Knowing that your loved one has specific legal rights based upon the hospice regulations, and that the Personal Representative for medical decisions can also make decisions (if the patient is mentally incompetent or the patient is unable to speak for himself (due to coma, sedatives, or temporary confusion), the family can stand up for the patient and make a difference. Speaking up and supporting the patient's beliefs and wishes go a long way toward obtaining quality hospice care.

It is extremely important for the patient to have made an Advanced Directive document specifying what medical treatment he wishes, what types of procedures he does not want, and if he or she wants to be resuscitated if his heart and/or breathing should stop. He can explain whether he wants to be sedated or not, whether he wants pain medications or not, whether he wants to simply be let go or whether the hospital should try to resuscitate him. Normally, most hospice patients do not wish to be resuscitated and sign a "DNR" form (a "Do Not Resuscitate" form). Most hospices will not perform CPR or resuscitation, but only provide comfort care to manage the symptoms of the terminal illness.

If a patient who is enrolled in hospice, still wants to be resuscitated, often the ambulance would have to be called (EMS system) and the EMS staff would perform CPR, etc. If the patients wants resuscitation, he may wish to specify what type of resuscitation would be acceptable. For example, some patients will accept medications to help them recover, while others refuse medications. Some accept CPR but don't want to be on IV medications or ventilators. Some do not want feeding tubes, others do. Every one is different, and if these concerns are documented in writing, it would help make sure the patient gets better care which honors his wishes.

But what about this situation, where the person with the Medical Durable Power of Attorney was acting contrary to the patient's own conscious wishes? In this case, an attorney could have been contacted to get enforcement of the patient's own wishes, and to revoke the daughter's power of attorney for medical decisions (in the above story), and to transfer the power of attorney to another person who would respect the patient's wishes.

Informing the hospital or hospice that you are prepared to go to court to protect your loved one will make the hospital or hospice think twice about ignoring the patient's wishes! Actually filing a complaint against whichever health care agency was violating the patient's rights (and promptly givign them and the news media a copy) would also help the agency quickly realize that it is in their interest to provide the care which meets the standards of care, honors the wishes of the patient and not the person with the Medical durable power of attorney. The person with the medical durable power of attorney has no power to act when the patient is still conscious, and mentally competent!!

These types of situations do occur. Some patients can't get proper pain medication. Some patients can't get proper nursing care coverage for their symptoms out of control. Some patients receive improper care that actually harms them or makes things worse (mistakes by caregivers or hospice staff). If you wish to protect your loved one, you need to watch what is going on, be aware of your loved one's wishes, and if there's a problem, then act promptly without delay.

Speak with the hospital or hospice RN assigned to your loved one's care. Speak with the unit manager or hospice director. Speak with the hospice Medical Director. Communication is the best first step to resolving these types of problems. If communication openly made does not correct the situation, file complaints and give the agency a copy promptly. You may wish to get an attorney right away, get the attorney's legal advice and have the attorney fax a letter to the agency, explaining that legal action will be brought to protect the patient's interest (if the attorney so advises). Whatever you do, do not delay! If you have questions about the standards of care in hospice, please contact us or view the topics on hospice at our main web page.

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