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:
What Can We do about this type of situation?
Knowing that your loved one has specific legal rights based upon the hospice regulations (see www.hospicepatients.org/law.html), 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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